AIDS and Cancer Patients in Vietnam

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Krakauer • Palliative Care for HIV / AIDS and Cancer Patients in Vietnam: Advanced Curriculum

MASSACHUSETTS GENERAL HOSPITAL

Palliative Care for HIV/AIDS and Cancer Patients in Vietnam Advanced Training Curriculum

Harvard Medical School Center for Palliative Care Eric L. Krakauer Editor-in -Chief

Palliative Care for HIV/AIDS and Cancer Patients in Vietnam Advanced Training Curriculum

Note Care has been taken to confirm the accuracy of the information presented and to describe generally accepted practices. However, the authors and editors are not responsible for errors or omissions or for any consequences from application of the information in this curriculum and make no warranty, expressed or implied, with respect to the currency, completeness, or accuracy of the contents of this curriculum. Application of the information in a particular situation remains the professional responsibility of the practitioner. The authors and editors have exerted every effort to ensure that drug selection and dosage set forth in this curriculum are in accordance with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new or infrequently employed drug. The drugs and dosages set forth do not necessarily have specific approval by the US Food and Drug Administration (FDA) for use as described in this curriculum.

This curriculum is copyrighted by Massachusetts General Hospital and was developed by Eric L. Krakauer. The copyright holder provides permission for free reproduction, translation, and printing of the curriculum, or of any part of the curriculum, with appropriate citation and reference, solely for educational, non-commercial purposes.

Copyright © 2008 Massachusetts General Hospital. Compilation by Eric L. Krakauer. All rights reserved.

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Table of Contents Table of Contents Acknowledgements............................................................................................................................vii List of Contributors............................................................................................................................ix

Sample Palliative Care Advanced (Module 2) Training Schedule.....................................................xi

Day 1 1.1

Sample Orientation to the Palliative Care (Module 2) Training Course...........................3

1.2

Achievements of Palliative Care in Vietnam, Period 2005-2008 Slide Presentation.............................................................................................................4

1.3

Opioid Policy in Vietnam Slide Presentation.............................................................................................................7

1.4

The History of the Palliative Care Movement / the Asia Pacific Hospice Palliative Care Network Syllabus.............................................................................................................................16 Slide Presentation..............................................................................................................23

1.5

Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure Syllabus.............................................................................................................................29 Palliative Care for Patients with Heart / Lung Disease Part B: Chronic Lung Disease Syllabus.............................................................................................................................35 Palliative Care for Patients with Congestive Heart Failure or Chronic Lung Disease Slide Presentation..............................................................................................................44

Day 2 2.1

Neurobiology of Pain Syllabus.............................................................................................................................51 Slide Presentation..............................................................................................................67 Review of Key Concepts in Pain Assessment and Treatment Slide Presentation..............................................................................................................72

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2.2

Death and Dying in Vietnamese Culture and Buddhism Syllabus.............................................................................................................................75 Death and Dying in Vietnamese Culture Slide Presentation..............................................................................................................80

2.3

Palliative Care for Patients with End-stage Kidney Disease, End-stage Liver Disease, and Massive Hemorrhage Syllabus..............................................................................................................................85 Slide Presentation..............................................................................................................96

2.4

Participant’s Projects: Development of Palliative Care Services or Research in Home Institutions Slide Presentation..............................................................................................................101

Group Pictures...................................................................................................................102

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Acknowledgements Acknowledgements I would like to express profound thanks to my gracious hosts and collaborators who invited me to help implement palliative care training in Vietnam and who made it possible for me to develop and compile these training materials. I thank especially Dr. Luong Ngoc Khue, Mme. Nguyen Thi Phuong Cham, and the Medical Services Administration of the Vietnam Ministry of Health; Prof. Nguyen Ba Duc and the National Cancer Hospital of Vietnam; Prof. Nguyen Duc Hien and the National Institute of Infectious and Tropical Disease of Vietnam; Dr. Le Truong Giang and the People’s AIDS Committee of Ho Chi Minh City; Dr. Howard Libman and the Harvard Medical School AIDS Initiative in Vietnam. I am very grateful to all those who contributed their expertise and experience to this curriculum. Finally, I thank the United States Centers for Disease Control, the United States President’s Emergency Plan for AIDS Relief (PEPFAR), the Open Society Institute’s International Palliative Care Initiative, and the United States Cancer Pain Relief Committee for their generous financial support. E.L.K.

This curriculum has been endorsed by the Lien Centre for Palliative Care, Duke – National University of Singapore Graduate Medical School, Singapore, for palliative care training in Vietnam.

This project was supported in part by Cooperative Agreement Number U62/CCU122408 from the United States Centers for Disease Control and Prevention (CDC). The contents are the sole responsibility of the authors and do not necessarily represent the official views of the CDC or the US Government.

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List of Contributors

Editor-in-Chief •

Eric L. Krakauer, MD, PhD, Director of International Programs, Harvard Medical School Center for Palliative Care; Attending Physician, Massachusetts General Hospital, Boston, USA

Co-Editors • • •

Luong Ngoc Khue, MD, MPH, PhD, Vice Director, Medical Services Administration, Ministry of Health of Vietnam, Hanoi, Vietnam Nguyen Ba Duc, MD, PhD, Director (ret.), National Cancer Institute of Vietnam; Professor Emeritus, Hanoi Medical University, Hanoi, Vietnam Nguyen Duc Hien, MD, PhD, Director (ret.), National Institute of Infectious and Tropical Diseases of Vietnam; Professor Emeritus, Hanoi Medical University, Hanoi, Vietnam

Contributing Editors • • •

Bui Bich Thuy, MD, Chief, Department of Infectious Disease, Haiphong Medical University, Haiphong, Vietnam Nguyen Thi Phi Yen, MD, National Cancer Hospital of Vietnam, Hanoi, Vietnam Nguyen Thi Phuong Cham, RP, Senior Pharmacy Expert, Medical Services Administration, Ministry of Health of Vietnam, Hanoi, Vietnam

Managing Editors • •

Chu Phuc Thi, MD, MS, Former Project Officer, Vietnam-CDC-Harvard Medical School AIDS Partnership (VCHAP), Hanoi, Vietnam Oscar Salas, Harvard Medical School Center for Palliative Care, Boston, USA

Contributors • • • • • • • • • • •

F. Amos Bailey, MD, University of Alabama at Birmingham School of Medicine, Birmingham, USA Gary J. Brenner, MD, PhD, Harvard Medical School & Massachusetts General Hospital, Boston, USA Nguyen Thi Phuong Cham, RP, Ministry of Health of Vietnam, Hanoi, Vietnam Do Duy Cuong, MD, Bach Mai National Hospital, Hanoi, Vietnam Cynthia Goh, MBBS, PhD, Singapore National Cancer Centre, Singapore Luong Ngoc Khue, MD, MPH, PhD, Ministry of Health of Vietnam, Hanoi, Vietnam Eric L. Krakauer, MD, PhD, Harvard Medical School & Massachusetts General Hospital, Boston, USA Shaun K. Malarney, PhD, International Christian University, Tokyo, Japan Tran Quynh Thai, MD, Hanoi Center for HIV/AIDS Treatment, Hanoi, Vietnam Bui Bich Thuy, MD, Haiphong Medical University, Haiphong, Vietnam Nguyen Thi Phi Yen, MD, National Cancer Hospital of Vietnam, Hanoi, Vietnam

Translators • • •

Pham Thi Van Anh, MD, MPH, Haiphong Medical University, Haiphong, Vietnam Do Duy Cuong, MD, Bach Mai National Hospital, Hanoi, Vietnam Le Thuy Lan Thao, MD, MPH, Consultant, Harvard Medical School Center for Palliative Care, Boston, USA

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Sample Palliative Care Module 2 2Advanced TrainingSchedule Schedule Sample Palliative Care Module Advanced Training Day 1 8am – 8:30am

Welcome

8:30am – 9:30am

One-Year Follow-Up Survey

9:30am – 10:15am

Lecture: Update on Viet Nam Palliative Care Initiative: Accomplishments and Plans

10:15am – 10:30am

Break

10:30am – 11:30am

Lecture: Update on Opioid Availability

11:30am – 1:30pm

Lunch

1:30pm – 2:00pm

Lecture: The International Palliative Care Movement & Asia Pacific Hospice Palliative Care Network

2:00pm – 3:00pm

Lecture: Palliative Care for Patients with Congestive Heart Failure and Chronic Lung Disease

3:00pm – 3:15pm

Break

3:15pm – 4:30pm

HIV/AIDS Case Presentation & Discussion

6:30pm – 8:30pm

Reunion Dinner

Day 2 8:00am – 9:15am

Lecture: Neurobiology of Pain / Review of Key Concepts in Pain Relief Brief pain case

9:15am – 10:00am

Cancer Case Presentation & Discussion

10:00am – 10:20am

Break

10:20am – 12:00pm

Lecture: Death and Dying in Vietnamese Culture

12:00pm – 1:30pm

Lunch CONTINUED

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xii 12

1:30pm – 2:30pm

Lecture: Palliative Care for Patients with End-stage Liver Disease, Massive Hemorrhage, and End-stage Renal Disease

2:30pm – 2:50pm

Break

2:50pm – 4:00pm

Large Group Discussion: Palliative Care in Participants Home Institutions: • Existing programs • Needs • Barriers

4:00pm – 4:30pm

Concluding Ceremony

Day 1

xiii

Sample Orientation to the VCHAP Palliative Care Module 2 Training Course Eric L. Krakauer, MD, PhD Harvard Medical School & Massachusetts General Hospital Welcome • Delighted to welcome back our course participants and colleagues from last year. Goals • To provide advanced and refresher training for our previous palliative care Module 1 trainees, and thereby: To help make palliative care available for HIV/AIDS and cancer patients throughout Vietnam; With time, to help make palliative care in Vietnam sustainable without foreign funding or technical assistance. • Sustainability will require well-trained and motivated palliative care clinicians to: Train other physicians as well as nurses and community health workers in palliative care. Implement and lead palliative care services for HIV/AIDS and cancer patients. Do research to assess: • Unmet needs of patients with HIV/AIDS, cancer, and other life-threatening illnesses in Vietnam. • Treatment outcomes of patients who receive palliative care as compared with those who do not. • We believe that you can become leaders in Vietnamese palliative care. • We hope that all of you who participate in these training courses will continue to meet regularly along with all physicians in Vietnam interested in palliative care, perhaps as a preliminary step to forming a Vietnam Palliative care Association. We believe that such regular meetings of physicians interested in palliative care will provide opportunities: • To continue to improve your knowledge and skill in palliative care; • To receive advice for your palliative care projects or research • To share your experiences with your palliative care colleagues, including your successes and the barriers you have faced as you worked to relieve the suffering of your patients and their families. • Please take full advantage of this training course by asking many questions and challenging me and the faculty to explain as clearly and fully as possible. Schedule • New lectures Updates on pall care in Vietnam • Especially new opioid prescribing regulations • New topics • Case presentations • Opportunities for presenting and discussing your successes and challenges in implementing palliative care in your home institutions and provinces. Copyright © Massachusetts General Hospital. All rights reserved.

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Achievements of Palliative Care in Vietnam, Period 2005-2008

I. Establishment and Implementation of Policy(1)

Achievements of Palliative Care in Vietnam, period 2005 - 2008

1. In 2005:

Dr. Luong Ngoc Khue Vice director – Vietnam Medical Service Administration

-

The Ministry of Health conducted a rapid situation analysis at 05 provincies and cities on palliative care => Found out the limitations for developing the policies on palliative care.

-

The pharmacist law was promulgated by the Government and effect since Oct. 2005 => many improvements in supplying, managing and use of the drugs.

1

2

I. Establishment and Implementation of Policy (2)

I. Establishment and Implementation of Policy (3)

3. In 2007

2. In 2006:

-

February :

- July _ Sept.: Reviewing all documents on supply, management and use opioids in treating pain according to WHO guidelines (Targeting the balance in national policy in opioids controlling) and INCB => find out the shortcomings to overcome.

+

Establishing the committee for revising and editing drug prescribing regulation: Decision No1728/QĐ - BYT on the revision and supplement for drug prescribing regulation and drug selling; implementing the editions and completion.

-

Sept: Decision No 3483/QĐ-BYT of the Ministry of Health dated 15th Sept. 2006: “National Guidelines on Palliative Care for HIV/AIDS and cancer patients” and Implementation workshops were implemented in Hanoi and Ho Chi Minh

- Oct.: Developing the palliative care work plan 2007-2008 All the activities were supported (financial and consultants) by VCHAP, FHI, OSI and consultants from PPSG.

+ Organizing the workshops on drug prescribing regulation (the 1st in Hanoi on Feb, the 2nd in Nha Trang on August, the 3rd in the Ministry pf Health on Sept, the 4th for the whole country in Hanoi on Dec. 2007) + Establishing the committee for developing guidelines on Methadone Substitution therapy + Revising and completing the regulation on narcotic management (National drug Administration) -

March: Organizing national workshop on supply, management and use of opioids

3

4

5

6

In cancer hospital

4

Achievements of Palliative Care in Vietnam, Period 2005-2008

I. Establishment and Implementation of Policy (4)

3. In 2007 (Cont.) -

Dec.: Decision No 5076/QĐ - BYT of the Ministry of Health dated 12th Dec. 2007 “ Guidelines for Methadone substitution therapy for treating narcotics addicted and implementation of the guidelines”

4. In 2008 -

Feb: Decision No 04/2008/QĐ-BYT dated 01 Feb. 2008: Regulation of drug prescription for out patients.

-

March and April: Implementation workshops on revised regulation of drug prescription for out patients (on March in Ho Chi Minh for Southern provinces, on April in Hanoi for Northern provincies).

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I. Establishment and Implementation of Policy (5)

8

II. Strengthening Knowledge and Skills on Palliative Care (1)

4. In 2008(Cont.) - Preparing for pilot program on Methadone substitution therapy in Hai phong and Ho Chi Minh + Organizing 2 trainings in Hanoi and Ho Chi Minh + Preparing for requesting and supplying methadone for pilot sites.

1.Train for treating doctors: 1.1. In 2007: March: organizing two training courses for TOTs on palliative care (2 weeks, total 34 participants) Oct. and Nov.: Organizing two PC training courses in Hanoi and Ho Chi Minh (5 days/course) 1.2. In 2008: March: National trainers (three months fellowship program, March to May 2008) May 5: Advance palliative care training (module2) in Hanoi

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10

II. Strengthening Knowledge and Skills on Palliative Care (2)

11

1.2. Training for health managers on palliative care at 6 PEPFAR provinces (Provincial health service, provincial drug control bureau, hospital leaders, head of HIV/AIDS and cancer department at the hospital, head of pharmacy departments) - 02 courses in Quang Ninh and Hai Phong (2007) - 03 courses in Hanoi, Ho Chi Minh and Can Tho 1.3. Developing training materials for doctors and nurses on palliative care - Directive committee for developing training materials was established by the MOH. - On going writing the training materials. Training materials for doctors will be completed on Sept and for nurses will be on Dec. 2008 12

5

Achievements of Palliative Care in Vietnam, Period 2005-2008

IV. Developing Palliative Care Network in Vietnam

III. Activities in 2008 (June - December) 1. Monitoring and directing the implementation of palliative care at provinces and fellows host institutions. 2. Organizing module II palliative care training for doctors in Ho Chi Minh and Southern provinces. 3. Organizing palliative care training for health managers in An Giang 4. Completing the three - month training materials for doctors and one month for nurses 13

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1. Integrating palliative care in treating cancer patients 2. Integrating palliative care in treating HIV/AIDS patients 3. Establishing palliative care sub groups under Provincial Medicine Associations 4. Promoting collaboration with international and regional countries on palliative care 14

Opioid Policy in Vietnam

Questions

OPIOID POLICY IN VIETNAM (PRODUCING, PROVIDING, DELIVERING, RETAIL SALE, DISTRIBUTING, PRESCRIPTION FOR PATIENT)

AND

• Why opioids are not available for relief of pain? • What is the role of government drug control policy?

BARRIERS TO PAIN RELIEF IN VIETNAM

• What are methods to assess and strengthen policy?

1

2

INCB Conclusion In many countries, consumption of opioid analgesics remains extremely low in comparison to medical need, and many national governments have yet to address this important deficit. International Narcotics Control Board (INCB), 1996 and PPSG 2007

The International Narcotic Control Board (INCB)

3

THE INTERNATIONAL NARCOTIC CONTROL BOARD - INCB (1) 1. What is INCB?

4

UN Conventions on Drug Control and Combat 1. Single Convention on Narcotic Drugs 1961 (amended in 1972)

INCB is the abbreviation of the International Narcotic Control Board ¾ Established in 1968.

2. Convention on Psychotropic Substances 1971

¾ Is a fair and independent treaty-based international organization that monitors implementation of the UN drug control conventions

3. UN Commitment on combating illegal trade, transportation narcotics and psychotropic substances 1988

In Vietnamese: Uỷ ban kiểm soát ma tuý quốc tế

5

6

7

Opioid Policy in Vietnam

THE INTERNATIONAL NARCOTIC CONTROL BOARD - INCB (3)

THE INTERNATIONAL NARCOTIC CONTROL BOARD – INCB (6)

2. Functions

a. Advocating for licit manufacture of, trade in and use of drugs ¾ INCB endeavors, in cooperation with Governments, to ensure that adequate supplies of drugs are available for medical and scientific uses and that the diversion of drugs from licit sources to illicit channels does not occur. ¾ INCB also gives guidance to governments for assessing chemicals used in the illicit manufacture of drugs to assist governments in combating the use of illicit chemicals

2. INCB functions b. With regard to illicit production, trade, and use: ¾ INCB identifies weakness of the international and national drug control systems and recommends remedial measures ¾ INCB also has the responsibility to assess chemicals used in illicit drug production to determine whether those chemicals are internationally controlled

7

THE INTERNATIONAL NARCOTIC CONTROL BOARD - INCB (4)

THE INTERNATIONAL NARCOTIC CONTROL BOARD – INCB (5)

3. INCB responsibilities

3. INCB responsibilities

a)

c) Analyses information provided by Governments, United Nations bodies, specialized agencies or other competent international organizations, with a view to ensuring that the provisions of the international drug control treaties are adequately carried out by Governments, and recommends remedial measure.

Administers a system of estimates for narcotic drugs and a voluntary assessment system for psychotropic substances and monitors licit activities involving drugs through a statistical returns system, with a view to assisting Governments in achieving, inter alia, a balance between supply and demand.

b) Monitors and promotes measures taken by Governments to prevent the diversion of substances frequently used in the illicit manufacture of narcotic drugs and psychotropic substances and assesses such substances to determine whether there is a need for changes in the scope of control of Tables I and II of the 1988 9 Convention.

THE INTERNATIONAL NARCOTIC CONTROL BOARD - INCB (2) 2. Functions of INCB Laid down in the following treaties: ¾ Single Convention on Narcotic Drugs 1961 ¾ Convention on Psychotropic Substances 1971 ¾ UN Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances of 1988

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8

8

d) Maintains a permanent dialogue with Governments to assist them in complying with their obligations under the international drug control treaties and, to that end, recommends, where appropriate, technical or financial assistance to be provided 10

Single Convention 1961 ¾ Noting that the use of narcotics for medical purposes is still needed to relieve pain and opioids need to be made available for that purpose ¾ Noting that drug addiction is a serious problem for individuals, a socio-economic problem for the society ¾ Recognizing the responsibility to stop and combat this evil 12

Opioid Policy in Vietnam

Single Convention 1961 (con’t)

Single Convention 1961 (con’t)

¾Articles 19,20,21: Nations shall submit annual report and

estimation to the INCB on quantity of licit use of narcotics for medical and scientific purposes. ¾Article 29,30: Manufacture, trade and distribution of drugs must be under license. However, this requirement need not to apply to such drugs as physicians may lawfully work with their duly authorized therapeutic functions. - It is required that written prescriptions must be used dispensing. - Prescription for drugs in Schedule I should be written on official forms to be issued in the form of counterfoil books by the competent governmental authorities…

¾ Article 34: Measures of Supervision and Inspection: a) All persons who obtain license, or who have managerial or supervisory positions in an enterprise shall execute faithfully and effectively provisions of current laws and regulations. b) Must keep records on all drugs manufacture, trade and use, such records shall respectively be preserved for a period of not less than two years. Where counterfoil books of official prescriptions are used, such books including counterfoil shall also be kept for a period of not less than two years. ¾ Article 36: Penal provisions: Any actions contrary to the provisions of this Convention shall be punishable offences (imprisonment or other penalties of deprivation of liberty).

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14

2005 United Nations Resolution “Treatment of Pain using Opioids” Impediments include national drug regulations Many countries have not examined impediments or removed regulatory barriers WHO/INCB document “Achieving Balance in National Opioids Control Policy”

ON OPIOID CONTROL

ECOSOC 2005 15

“Balance” is the Fundamental Principle

Balance

Opioid CONTROL

16

PATIENTS’ ACCESS TO opioid

National policy should establish a drug control system that prevents diversion and ensures adequate availability for medical use of opioid analgesics Drug control measures should not interfere with medical access to opioid analgesics Source: World Health Organization. Achieving balance in national opioids control policy: Guidelines for Assessment. Geneva, Switzerland: WHO; 2000.

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9

Opioid Policy in Vietnam

Achieving Balance in National Opioids Control Policy: Guidelines for Assessment (2000) 9 For governments and health professionals

WHO/EDM/QSM/2004.4

1. Evaluate national drug control policy

9 Explains rationale and necessity for opioid availability

ENGLISH ONLY NARCOTIC & PSYCHOTROPIC DRUGS ACHIEVING BALANCE IN NATIONAL OPIOIDS CONTROL POLICY GUIDELINES FOR ASSESSMENT

2. Estimate annual requirements; report consumption statistics

9 16 criteria

3. Administer effective distribution system to patients

9 Simplified Checklist 9 22 Languages www.painpolicy.wisc.edu

3 Main Parts to Achieving Balanced Policy WHO, 2000

WORLD HEATHL ORGANIZATION

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20

WHO Criteria for Assessing Policy 1. 2. 3. 4. 5. 6. 7. 8. 9.

Opioids absolutely necessary Government obligation to ensure availability Designate Competent Authority Estimate requirements; report statistics Address fear of legal sanctions Use correct terminology regarding addiction Avoid restrictions that limit medical decisions Avoid unduly strict prescription requirements Cooperation to ensure availability

NEEDS AND CURRENT STATUS OF OPIOID USE IN VIETNAM

21

I. OPIOID IS ABSOLUTELY NECESSARY FOR MEDICAL PURPOSES (1) 1. 2.

Both list of Essential Drugs (WHO, Vietnam) and list of drugs used in hospital settings have opioids for treatment of pain Some finding in the Palliative Care Rapid Situational Analysis in 5 provinces of Vietnam (MOH in collaboration with Family Health International, POLICY Project, CDC/VCHAP)

3. MoH issued the National Palliative Care Guidelines for Cancer and AIDS patients.

II. FACTORS AFFECTING OPIOIDS AVAILABILITY IN VIETNAM 1. Laws and Regulations. 2. Availability of opioids 3. Provision of opioids to patients a) Manufacture b) Distribution, reservation and selling c) Prescription

4. Barriers to the availability of opioids

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10

22

24

Opioid Policy in Vietnam

2. AVAILABILITY OF OPIOIDS

1. LAWS AND REGULATIONS a) 38 current legal documents related to opioid: • Constitution, article 61. • Law on Illicit drug Control and Combat. • Penal Code • Drug Law • Other guidances under laws: For the health system, key regulations are those for: narcotics management, psychotropic management, prescription and drugs must be sold with prescriptions.

Strong opioids: – Morphine 10mg (injection), cost of one 10mg vial – Morphine 30mg (tablet) (10mg tablet not available) Morphine is currently not enough in Vietnam and long-acting formulations are not available. – Pethidine 100mg (injection)/ 2ml vial (at commune level, only used for emergency cases) – Fentanyl 0,5mg (injection)/10ml vial- 0,1 mg/2ml vial – Fentanyl (patch) 50 mcg, 25mcg Not very much available due to strict reservation conditions and expensive cost. – Oxycodone, hydromorphone, hydrocodone, methadone and buprenorphine are not available in Vietnam Mild opioids: No sand-alone codeine for pain relive

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3. PROVISION OF OPIOIDS TO PATIENTS 3.1. Procurement, manufacture 3.2. Supply, reservation 3.3. Prescription 3.4. Selling in retail

3.1. PROCUREMENT, MANUFACTURE (1) a.

Opioid procurement

¾

The Drug Administration of Vietnam (Unit for Controlled Drugs) submit annual evaluation of drug use to the INCB. The

evaluation based on

consuming of opioids from the previous year. ¾

Health Service and centre hospitals send the provide for opioids to Drug Administration of Vietnam from the previous year.

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Lượng tiêu thụ morphin toàn cầu năm 2004 120

100

80

60

Global mean 5,67mg

mg/người

Định lượng toàn cầu Úc

(115,7151 mg)

1,0753 mg

Colombia

0,1176 mg

Nigeria

Canada (64,1751 mg)

Hoa Kỳ (48,8145 mg)

40

5,67 mg

Ác hen ti na

---

Panama

0,6261 mg

Serbia & Montenegro

2,0794 mg

Sierra Leone

0,0028 mg

Uganda

0,4001 mg

Việt Nam

0,0993 mg

---không báo cáo số liệu

Nhật Bản (4,7174 mg) Panama Ý

20

(5,3206 Mg)

VIệt Nam

Serbia & Montenegro

Sierra Leone Ác hen ti na

Uganda

Colombia

0 Nguồn: Ủy ban Kiểm soát ma tuý quốc tế; Niêm giám Dân số của Liên hợp quốc Thực hiện bởi: Nhóm nghiên cứu chính sách và thuốc giảm đau – Trường Đại học Wisconsin/ Trung tâm hợp tác Tổ chức Y tế thế giới, 2006

Quốc gia (155)

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Định lượng toàn cầu được tính toán bằng việc thêm vào các dữ liệu mỗi mg trên đầu người cho tất cả các quốc gia, sau đó đem chia cho tổng số quốc gia

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Opioid Policy in Vietnam

Narcotics use in Vietnam Drug

2001

2002

2003

Narcotics use of Vietnam and some other countries before 2004 (source: INCB)

2004

2005

Drug

Việt Nam

Malaysia

Korea

Philippines

Morphine (kg)

4

4

8

12

Morphine (kg)

8

33

97

18

Codeine (kg)

1 640

1 703

2 092

2 616

2 968

Codeine (kg)

2 616

189

229

30

Dihydrocodeine (kg)

0

0

0

0

0

Dihydrocodeine (kg)

0

282

1720

0

Pholcodine (kg)

0

0

0

0

0

Pholcodine (kg)

0

49

0

0

900

900

1 395

2 160

1 845

Hydrocodone (kg)

0

0

2

0

Methadone (kg)

0

0

0

0

0

Oxycodone (kg)

0

0

13

5

Diphenoxylate (kg)

0

0

0

0

0

Dextropropoxyphene

2 160

0

0

0

Fentanyl (g)

71,150

82,365

40,059

138,500

120,000

Pethidin (kg)

6

49

37

31

35

0

4

0

0

Dextropropoxyphene

Total amount of opioids in Vietnam (statistics from INCB) => Very low in compare to the population and needs of patients 31

Use by DDD/1,000,000 person/day Codeine

Fentanyl

Morphine Pethidine

China

1

13

7

5

Philippines

1

1

7

1

Indonesia

2

1

-

1

Việt Nam

-

5

1

3

Malaysia

-

41

22

30

40

93

77

17

1

67

33

21

Korea Singapore

Methadone (kg) Diphenoxylate (kg)

0

32

0

0

Fentanyl (g)

138,500

222,262

604,480

13,280

Pethidin (kg)

31

107

122

9

32

3.1. PROCUREMENT, MANUFACTURE (2) b. Manufacture

¾ Material manufacture: 0 (import 100%) ¾ Product manufacture: - Morphine: 02 enterprises - Codeine : 40 (only in combination forms) - Dextropropoxyphene: 15 (only in combination forms) - Fentanyl: 0 - Pethidine: 0 ¾ Manufacturers and companies allowed to produce and sell narcotics are reluctant to produce narcotics. Mostly produce in combination forms below the controlled levels. 33

3.2. SUPPLY

34

3.3. SELLING IN RETAIL

Northern provinces

Central Pharmaceutical Company # 1

- Provincial Pharm. Companies - Central level Hospitals and Hospitals of other sectors - Research Institutes, Universities, Secondary Schools Huế

Central Pharmaceutical Company # 3 Central Pharmaceutical Company # 2

Đà Nẵng Southern-Central provinces and Highland

Provincial Pharm. Companies Central level Hospitals and Hospitals of other sectors Research Institutes, Universities, Secondary Schools Southern provinces 35

12

¾ Number of drug stores allowed to sell opioids are different from province to province. Some provinces have only one place (Quang Ninh, Khanh Hoa) ¾ There is sill no mandatory or support system for businesses to sell prescribed opioids for therapeutic purposes ¾ The current regulations (issued in 2003) do not allowed private businesses to sell narcotics (conflicted with Drug Law issued in Oct 2005). The provincial pharmaceutical company only sell narcotics in one place depending on the organization and scale of that company. ¾ Some provinces add one condition to request the opioid prescription must be approved by the director of the company 36

Opioid Policy in Vietnam

Inappropriate number of retail outlets No.

Province

Population (in million)

No. of districts

1 2

No. of opioid retail outlets

Quang Ninh

1,078

14

1

Nam Dinh

1,961

14

12

3

Hai Duong

1,711

14

14

4

Khanh Hoa

1,122

8

1

5

Binh Thuan

1,115

8

8

6

Đaklak

1,710

13

14

8

Đong Nai

2,193

11

8

9

Tra Vinh

1,028

8

8

10

TP HCM

5,891

24

2

11

Hanoi

3,145

14

4

3.4. PRESCRIPTION • Issued with Decision No 04/2008/QD- BYT, Date February 01,2008 of Minister of Health on Prescriptive Regulation for out – patients . • There are prescription of opioids for pain relief treatment of cancer and AIDS patients from article 11,12,13,16):

Population number from the 2005 Annual Statistics Data from MoH 2006 monitoring and inspection

37

Article 11. Prescription for narcotic drugs 1. Every year, the facilities of curative care and consultation register the signature of prescribers in charge on narcotic drug prescription with narcotic selling facilities; 2. Using “ N” form of prescription; 3. Prescription of narcotic drug for acute diseases should be sufficient and not exceed 7 days. 39

Article 12. Prescription of opioids for pain relief treatment of cancer and AIDS patients 4. Cancer and AIDS patients stay at home at the last phase of disease, the assigned health servicer of communal level goes to see and prescribe opioids for patient without exceeding 7 days each time. 5. Prescriber of opioids demand the member of patient’s family to sign a commitment on using opioids with right purposes and having the legal responsibility in case of not using it for treatment of patient.

41

38

Article 12. Prescription of opioids for pain relief treatment of cancer and AIDS patients

1.

Following the regulation item 1; 2 under article 11;

1.

Health service facilities which diagnose cancer and AIDS patients will provide a health record book of chronic disease (Using opioids for pain relief ) in which lower level of health service facilities can provide opioids for patients;

1.

Dose of opioids will be based on the need of patients. Duration for each prescription is not over 1 month. But at the same time, prescriber has to prescribe 3 prescriptions for 3 stages of treatment ; prescription for each stage of treatment is not over 10 days ( the starting day and the ending day is noted clearly). Prescriber has to guide the member of patient’s family to know: Prescription of patient for treatment of 2nd and 3rd stage is issued or sold with confirmation of health service facility at communal level about patient to be alive. The time for buying or getting drug is one day before of that treatment stage (if meeting holiday, patient buys or gets drug one day before holiday); 40

Article 13. The usable value of prescription for buying or getting drug 1. The prescription will be usable value for buying drug at all legal pharmacy in 5 days since day of prescription to be issued. 2. For narcotic prescription, the time for drug buying or drug getting has to suit with treatment days written in prescription.The time of buying, getting opioids for treatment of 2nd, 3rd stage of cancer or AIDS patients is 1 day before the day of each treatment stage (if meeting holiday, patients buy or get drug 1 day before holiday). Prescription of opioids buy only either at pharmacies where the signature of prescriber has registered or Pharmaceutical Department of hospital where prescription is prescribed ( if pharmacies of local for selling of opioids is not available). 42

13

Opioid Policy in Vietnam

Article 15. Regulations for narcotic drug issuer and seller based on prescription 1. Every stage of issuing, selling is not over 10 days. The duration of selling narcotic drugs based on prescription follows regulation item 3 under article 12. 2. The drug issuer or seller has to note the duration of drug use in prescription that drug is sold to keep as archives. The prescription as archives has to sufficiency of signature, ID, full name, address of patient. Keeping as archives prescription with the confirmation of health service facility about patient to be alive for 2nd and 3rd stage of treatment. 3. Writing report for getting back narcotic drugs from family member of patient’s if a few of drug were used not as whole. 4. The report is written into 2 copies (1 copy is kept as archives at place of drug issuer or seller; 1copy for family member of patients). The narcotic drugs that get back from patient’s family has to put in a separated place and maintaining, settlement follow the regulation on narcotic drugs management. 43

4. BARRIERS TO THE AVAILABILITY OF OPIOID (1) 4.1. Legal documents ¾ Still using negative terms referring to opioids in the legal documents. Example “Controlled substances” including drugs can cause dependence and also essential drugs. Should not identify opioids with social evils, crimes and drug use. Should use more positive terms, for example: explaining that “opioids are addicting drugs” can be replaced by “opioids are drugs that may cause psychological dependence and can be diversed” ¾ Should not regulate to frame all opioid names to avoid the risk of opioid diversion ¾ Should confirm that opioids are essential drugs for pain relief. ¾ Should have change on assessment for patients’ opioid need? Have clear regulations to submit supplement request or to reduction request for opioid need to INCB 45

4. BARRIERS TO THE AVAILABILITY OF OPIOID (3) 4.3. Technical, knowledge and education aspects ¾ Technical aspect:

- No long-acting morphine produced yet - Lack of formulations and strengths to choose between options (i.e: only morphine 30mg tablet) - No stand-alone codeine for pain relief

¾ Knowledge and education aspects:

- Reluctance of doctors to prescribe and of pharmacists to sell opioids - Lack of adequate knowledge on appropriate use of opioids for patients - No national palliative care training for health care workers. 47

14

Article16. Keeping as archives of narcotic drug materials 1.

2. 3.

Health service facilities keep as archives the original prescription “N” of narcotic drug materials in duration of 2 years from using date of the last page of prescriptive book “N”. Keeping also as archives the confirmation of families of cancer and AIDS patients on using of opioids in duration 2 years. The facilities of narcotic carry on business preparing, issuing, selling keep as archives the prescriptions “N” following regulations of narcotic drug management. When duration of keeping as archives of narcotic drugs materials come to an end (the original prescriptions “N”, the confirmation of patient’s families on narcotic use), the health service facilities will establish the committee to destroy above materials according to define of regulation on narcotic drugs management. 44

4. BARRIERS TO THE AVAILABILITY OF OPIOID (2) 4.2. Opioid availability ¾Low quantity produced (amount, various strengths…) low number of suppliers. ¾Additional regulations by other levels of authorities: - DoHs request to add a regulation: pharm. companies have to approve all opioid prescriptions and collect used empty vials or packages => one more complex step for patients; - Hospitals or departments request to return used empty vials => physicians are reluctant to prescribe. 46

Reducing Barriers to Prescribing 1. France: 2. Mexico: 3. Italy: 4. Germany: 5. Poland: 6. Peru: 7. Romania: 8. Vietnam:

Before 7 days 5 days 8 days 1 day 100 mg 1 day 3 day supply 7 days

Recent 28 days 30 days 1 month no limit 4.0 grams 14 days 30 day supply 1 month 48

15

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network Cynthia R Goh, MBBS, PhD National Cancer Centre Singapore

Objectives After the lecture, the trainees will be able to: 1. Describe the origins of the modern hospice movement. 2. Describe the development of palliative care worldwide. 3. Understand the Asia Pacific Hospice Palliative Care Network and other resources available to support the development of palliative care in Asia. Contents 1. Origins of the modern international hospice movement 1.1. Origins of the words “hospice” and “palliative care” -

The word “hospice” is taken from the Latin word “hospitium” which means hospitality. It is the same root from which the English words “hotel”, “hostel” and “hospital” come from.

-

In the Dark Ages and Middle Ages in Europe, hospices were places of shelter and safety for travelers journeying across Europe, including pilgrims traveling to a shrine or holy place, often in fulfillment of a vow. Religious orders, such as the Knights Hospitalers and some monasteries, set up hospices which offered hospitality to these travelers, and treatment for injuries and illness.

-

When the modern hospice movement started in England, the word “hospice” was chosen because the original concept of a hospice was a place of shelter and hospitality for the terminally ill, who were seen to be journeying from this world to the next.

-

However, the word “hospice” had different meanings in other European languages. In modern French, it acquired the meaning of “a poor house or place for the destitute.”

-

When Dr Balfour Mount wanted to start hospice care in Montreal in French-speaking Canada, he could not use the word “hospice”. He coined the term “soins palliative” or “palliative care”. The word “palliative” was taken from the Latin word “pallium”, which means “cloak”. The idea was that the patients’ symptoms were covered over, or cloaked, even though the disease could not be cured.

Copyright © 2007 Cynthia Goh. All rights reserved.

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The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

-

The words “hospice care” and “palliative care” are often used interchangeably, and indicate the same type of holistic care provided for patients with life-threatening illness. However, there are local preferences for the usage of the two terms. For example, in the USA, the term “hospice care” is used to mean hospice home care, while services in hospital for the same group of patients is termed “palliative care”. In other parts of the world, such as in the UK and Singapore, community services are often called “hospice services” while hospital services are termed “palliative care services”. A stand-alone inpatient facility providing this type of care is often called a hospice.

1.2. Cicely Saunders and St Christopher’s Hospice -

While there were institutions called hospices which looked after the destitute and the dying in various countries in the 19th and early 20th century, the modern hospice movement can be said to have started with the work of Dame Cicely Saunders, who built St Christopher’s Hospice in London, UK in 1967.

-

Cicely Saunders (1918-2005) was a remarkable person. She was a student at Oxford University when the Second World War broke out. She gave up her studies to join the war effort in London by training as a nurse at St Thomas’ Hospital in London. She was greatly influenced by her patients, particularly by David Tasma, a Polish refugee in London, with whom she discovered the needs of terminally ill patients. When David Tasma died, he left her all his money, 500 pounds sterling, and asked to be a “window” in her home. After she qualified as a nurse, Cicely Saunders had to give up nursing because of a back injury. She then trained as a lady almoner, nowadays called a medical social worker. She continued to be particularly close to her patients who were dying and to take up their cause. She was advised to study medicine, in order to have a greater influence. So in her mid-thirties, she studied to become a doctor, and ended being triply qualified as a nurse, a social worker and a doctor. Soon after graduating as a doctor, she went to work among nuns looking after terminally ill patients, and was the first to describe and document the use of morphine orally with regular dosing for the control and prophylaxis of chronic pain.

-

She gathered round her a group of like-minded people, who spent many years conceptualizing the holistic care needed for terminally ill patients, and gathering enough resources to build a model “hospice”. St Christopher’s Hospice opened its doors to patients in 1967. The word “hospice” was chosen by this Foundation Group at St Christopher’s.

-

Through this work, Cicely Saunders was able to demonstrate how good care can be provided for terminally ill patients. She traveled widely and was a charismatic speaker, inspiring a whole generation of doctors, nurses and social workers in many countries to go into this field.

Copyright © 2007 Cynthia Goh. All rights reserved.

17

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

2. Development of Palliative Care worldwide 2.1. UK -

Following the work of Cicely Saunders, many in-patient hospice facilities sprang up in the UK. These were closely followed by the development of hospice home care services, such as the one at St Christopher’s Hospice which started in 1968. Many communities set up their own in-patient hospices, funded by charitable funds with some input from the National Health Service. Later, hospital palliative care services also developed. Most of these are consultative in nature with no in-patient hospital beds, with the exception of the Supportive Care Unit at the Royal Marsden Hospital, a famous cancer hospital.

-

In 1987, Palliative Medicine was recognized as a medical specialty in the UK, and accredited higher medical training of 4 years was established in 1989. By 1995, all consultant staff at National Health Service funded facilities, and medical directors of hospices were required to be accredited specialists in Palliative Medicine.

2.2 Australia and New Zealand -

In Australia, hospices were in existence before the 1960s, but the hospice movement was given a boost by the visit of Cicely Saunders in the mid-1970s. Both Australia and New Zealand have well developed palliative care services and strong professional societies, such as the Australia New Zealand Society of Palliative Medicine, and Palliative Care Australia. Palliative Medicine was recognized as a medical specialty in Australia in 2000, and in New Zealand shortly before that, and accredited training is well established.

2.3 USA -

For many years since the 1970s, hospice home care services were the main services in the USA. Known as “hospice care”, these services to support terminally ill patients at home were given a boost when Medicare funding for them became available in 1982. However, this also brought about constraints, because patients under hospice care had to forgo other treatments such as chemotherapy or radiotherapy. Originally, Medicare funding was available to an individual for 90 days per life-time. This was later amended to 180 days and longer.

-

The boost to the development of palliative care in the USA came when the Soros Foundation funded the Project of Death in America from 1994 to 2003, giving US$45 million in grants. Among other things, this project funded scholars in academic institutions to work in the palliative care field and do research. This has given rise to a generation of leaders in palliative care in the USA. Palliative medicine was recognized as a medical subspecialty in 2006, and accredited training is being established.

2.4 Other developed countries -

Palliative care is well developed in Canada where it is funded by the provincial governments. In Western Europe, palliative care development is variable in different countries. The European Association of Palliative Care is active in promoting research and education in Palliative Care.

Copyright © 2007 Cynthia Goh. All rights reserved.

18

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

2.5 Eastern Europe and Africa -

In many of the developing nations of Eastern Europe and Africa, palliative care services have developed, supported by philanthropic efforts from developed countries such as the UK and the USA. The Soros Foundation through its arm, the Open Society Institute, has initiated many education efforts in countries in Eastern Europe and Africa. Particularly successful models exist in Romania and in Uganda, which serve as training centres catalyzing the development of palliative care in those regions.

2.6 Worldwide Networking -

There are currently two groups which link individuals and organizations internationally in the field of palliative care. The International Association for Hospice and Palliative Care (IAHPC) has an international membership of individuals and organizations, and focuses on education and professional development. The Worldwide Palliative Care Alliance (WPCA) has a membership of national associations of hospice and palliative care, and focuses on policy issues, advocacy, quality and standards.

3. The Asia Pacific Hospice Palliative Care Network 3.1 Development of hospice & palliative care services in Asia -

There is much variation in the development of palliative care services in the different economies of Asia.

-

Some countries, such as Japan, South Korea, Taiwan, Hong Kong, Singapore and Malaysia have well-established services covering a significant portion of their cancer deaths. Many of these services are wholly or partially funded by the government or insurance. Essential drugs are available. Palliative Medicine is recognized as a medical specialty and training is well developed.

-

Many less economically developed countries have also started palliative care services. These include Indonesia, Philippines, Thailand, Vietnam, China and India. Services have begun to develop, but coverage of cancer deaths is insignificant. Essential drugs are not easily available.

3.2 History and development of the APHN -

The concept of a network of individuals working in palliative care in the Asia Pacific region originated with Dr Shigeaki Hinohara, a Japanese cardiologist who had access to funding from the Sasakawa Foundation (now known as the Nippon Foundation). In 1995, Dr Hinohara invited the first group of pioneers in hospice care to Tokyo. A series of meetings followed, linked to various regional conferences. By 1999, the group had resolved to form an organization, the Asia Pacific Hospice Palliative Care Network (APHN). A secretariat was set up to oversee its formation and registration as a legal entity in Singapore, which was achieved in 2001. It has 14 Founding sectors, which are: Australia, Hong Kong, India, Indonesia, Japan, Korea, Malaysia, Myanmar, New Zealand, Philippines, Singapore, Taiwan, Thailand and Vietnam. Each of these sectors

Copyright © 2007 Cynthia Goh. All rights reserved.

19

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

have the right to appoint one member to the Governing Board of the APHN on a rotating basis. The membership of the APHN includes organizations and individuals. There are currently 1,062 members from 29 countries, of which 165 are organizations. 3.3 APHN Programs include: •

Providing faculty to teach in resource poor countries



Clinical fellowships in palliative care



APHN Diploma / Flinders Graduate Certificate Course



Information service and directory of service providers



Travel bursaries to the Asia Pacific Hospice Conferences



Consultancy for service development

3.4 The Asia Pacific Hospice Conferences -

The first conference took place in Singapore in 1989, and the second in 1996. Since 1999, these have been organized by the different sectors of the APHN once every 2 years. These bring together palliative care practitioners throughout the Asia Pacific region. The last conference was held in Manila, Philippines in September 2007, and the next, the 8th Asia Pacific Hospice Conference will be held in Perth, Australia in September 2009.

3.5 Resources available – Useful websites for information on palliative care services, bursaries for travel and courses can be found below: •

International Association for Hospice & Palliative Care: www.hospicecare.com



Help the Hospices: www.helpthehospices.org.uk



Hospice Information Service: www.hospiceinformation.info



National Hospice and Palliative Care Organization: www.nhpco.org



European Association for Palliative Care: www.eapc.org



Asia Pacific Hospice Palliative Care Network: www.aphn.org

Copyright © 2007 Cynthia Goh. All rights reserved.

20

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

Daily evaluation questions 1. Hospice care and palliative care provide the same type of care to patients. Yes No 2. Which of the following developing countries have good palliative care services and education? a) Thailand b) Romania c) Uganda d) Philippines e) b and c 3. The membership of the Asia Pacific Hospice Palliative Care Network includes both individuals and organizations. Yes No

Copyright © 2007 Cynthia Goh. All rights reserved.

21

The History of the Palliative Care Movement / The Asia Pacific Hospice Palliative Care Network

References (Suggested reading) Goh CR. The Asia Pacific Hospice Palliative Care Network: Supporting Individuals and Developing Organizations. J Pain Symptom Manage 2007; 33(5):563-67. References for writing the lecture Asia Pacific Hospice Palliative Care Network: www.aphn.org Goh CR. Status of Cancer Pain and Palliative Care in Singapore. J Pain Symp Manage 1993; 8(6):431-433. Goh CR. Singapore : Status of Cancer Pain and Palliative Care. J Pain Symptom Manage 1996; 12(2):130-132.

Goh CR. The Present Status of Hospice in Asia – Singapore. In: Symptom Management in Cancer Patients 2004. Dr Fumikazu Takeda (Editor). Goh CR. The Asia Pacific Hospice Palliative Care Network – A Network for Individuals and Organisations. J Pain Symptom Manage 2002; 24(2):128-133. Goh CR and Shaw RJ. Palliative Care Education in Asia-Pacific. In: Palliative Care: Building a Culture of Learning. Bee Wee and Nic Hughes (eds). Oxford University Press 2007. Hospice Information Service www.hospiceinformation.info

(St

Christopher’s

Hospice

&

Help

the

Hospices):

International Observatory on End of Life Care: www.eolc-observatory.net Saunders C M, Foreword, Oxford Textbook of Palliative Medicine, Third Edition, Doyle D, Hanks G, Cherny N and Calman K (eds), Oxford University Press 2006. Shaw Rosalie. The Development of Palliative Medicine in Asia. In: Bruera E, Higginson I J, Ripamonti C, von Gunten C (eds). Textbook of Palliative Medicine. Edward Arnold 2006.

Copyright © 2007 Cynthia Goh. All rights reserved.

22

History of the Palliative Care Movement

Objectives

History of the Palliative Care Movement

After the lecture, the trainees will be able to: 1. Describe the origins of the modern hospice movement

The Asia Pacific Hospice Palliative Care Network

2. Describe the recent development of palliative care worldwide

Associate Professor Cynthia Goh

3. Have an understanding of the Asia Pacific Hospice Palliative Care Network and other resources available to support the development of palliative care in Asia

Senior Consultant & Head Department of Palliative Medicine National Cancer Centre Singapore

Copyright © 2007 Cynthia Goh. All rights reserved.

1

HOSPICE

2

HOSPICE The concept of a safe place of refuge for travelers.

The word “hospice” is taken from the Latin word “hospitium” which means “hospitality”.

Originally for pilgrims traveling across Europe in the Middle Ages. Monasteries used to look after tired, sick or injured pilgrims & gave them hospitality.

It is the same root from which the English words “hotel”, “hostel” and “hospital” come from.

The modern concept of hospice provides care & refuge for travelers journeying from this world to the next. 3

HOSPICE

4

Common usage of the words:

The word “hospice” in French means a poor house, or place for the destitute. In French-speaking Canada, Dr Balfour Mount in Montreal invented the word “palliative care” to mean hospice care. The word “palliative” comes from the Latin word “pallium” which means a cloak. To palliate is to cover, as with a cloak, over the symptoms. 5

Hospice Care Usually called this in the Community

=

Palliative Care Usually called this in Hospitals 6

23

History of the Palliative Care Movement

Palliative Care has its roots in the International Hospice Movement Cicely Saunders 1918-2005

• Studied at Oxford University • To help the World War II war effort, trained as nurse at St Thomas’ Hospital, London. • Discovered the needs of terminally ill patients, through her patients like David Tasma, a Polish refugee in London. • When he died, he left her 500 pounds to be a “window” in her home.

7

• Injured her back while nursing and had to give it up. • Trained as lady almoner, (now called “medical social worker”). • Was advised that she needed to become a doctor for people to listen to her. • Trained at St Thomas’ Hospital as a doctor in her mid-thirties.

Cicely Saunders 1918-2005 8

• She was the first doctor to describe and document the use of morphine orally with regular dosing for the control and prophylaxis of chronic pain. Cicely Saunders 1918-2005 9

Cicely Saunders 1918-2005 10

1967 St Christopher’s Hospice, London • Gathered a group of people to conceptualize the holistic care needed for terminally ill patients. • St Christopher’s Hospice opened its doors to patients in 1967. • The word “hospice” was chosen by the Foundation Group at St Christopher’s.

Cicely Saunders 1918-2005 11

24

12

History of the Palliative Care Movement

Development of Palliative Care Worldwide

Development of Palliative Care Worldwide

UK

UK

Following the work at St Christopher’s, many in-patient hospice facilities sprang up in the UK.

Hospital palliative care services developed later. Most provide consultative services with no inpatient hospital beds. The exception was the Supportive Care Unit at the Royal Marsden Hospital, a cancer hospital, which has in-patient hospital beds.

Hospice home care services followed. Many communities set up their own in-patient hospice, funded by charitable funds with some input from the government.

13

Development of Palliative Care Worldwide

14

Development of Palliative Care Worldwide

UK

Australia and New Zealand

Palliative Medicine was recognized as a medical specialty in the UK in 1987.

In Australia, hospices were in existence before the 1960s.

Accredited advanced specialist training of 4 years was established in 1989.

Hospice movement was given a boost by the visit of Cicely Saunders in the mid-1970s.

By 1995, all consultant staff at National Health Service funded facilities, and medical directors of hospices were required to be accredited as a specialist in Palliative Medicine.

Both Australia and New Zealand have well developed palliative care services and strong professional societies, such as the Australia & New Zealand Society of Palliative Medicine, and Palliative Care Australia. 15

16

Development of Palliative Care Worldwide

Development of Palliative Care Worldwide Australia and New Zealand

Palliative Medicine was recognized as a medical specialty in Australia in 2000 and in New Zealand shortly before that. Accredited specialist training is well established. Government funding of palliative care services are well established.

17

USA Since the 1970s, hospice home care services were the main services in the USA. Known as “hospice care”, these services support terminally ill patients at home. Medicare funding for these services became available in 1982. However, patients under Hospice Care had to forgo other treatments such as chemotherapy or radiotherapy. Medicare funding was originally available to an individual for 90 days per life-time. This was later amended to 180 days and longer. 18

25

History of the Palliative Care Movement

Development of Palliative Care Worldwide

Development of Palliative Care Worldwide

Other developed countries

USA

From 1994 to 2003, the Soros Foundation funded the Project of Death in America, giving US$45 million in grants. This charitable project funded scholars in academic institutions to work in the palliative care field and do research, giving rise to a generation of leaders in palliative care in the USA. In 2006, Palliative Medicine was recognized as a medical subspecialty, and accredited training was established in 2008.

Palliative care is well developed in Canada where it is funded by the provincial governments. In Western Europe, palliative care development is variable in different countries. The European Association of Palliative Care is active in promoting research and education in Palliative Care.

19

20

Development of Palliative Care Worldwide

Development of Palliative Care Worldwide

Eastern Europe and Africa

Many developing nations of Eastern Europe and Africa have palliative care services, supported by philanthropic efforts from the UK and the USA. The Soros Foundation, through its arm the Open Society Institute, has initiated many education efforts in countries in Eastern Europe and Africa. Particularly successful models exist in Romania and in Uganda, which serve as training centres catalyzing the development of palliative care in those regions.

Worldwide Networking There are currently two groups which link individuals and organizations internationally.

The International Association for Hospice and Palliative Care (IAHPC) has an international membership of individuals and organizations and focuses on education and professional development. The Worldwide Palliative Care Alliance (WPCA) has a membership of national associations of hospice and palliative care which focuses on policy issues, advocacy with governments, quality and standards.

21

22

Palliative care services are in various stages of development in Asia Japan South Korea Taiwan Hong Kong Singapore Malaysia

The Asia Pacific Hospice Palliative Care Network APHN

Services are fairly well developed. Some payment by govt or insurance. Essential drugs available. Education well developed. Recognition as a specialty.

Hospice home care in Singapore 23

26

Mackay Hospice in Taipei 24

History of the Palliative Care Movement

The Asia Pacific Hospice Palliative Care Network

Palliative Care Services are in Various Stages of Development in Asia Philippines Indonesia Thailand Vietnam Myanmar China India

Services are starting up. Coverage by palliative care services patchy or minimal. Essential drugs not easily available. Much to be done in education

Home care in Myanmar

A Network of Individuals & Organisations Now has 1,062 members in 29 Countries 165 Organisations / 897 Individuals

Benh Vien K in Hanoi 25

26

Asia Pacific Hospice Palliative Care Network

APHN - History and Development • The concept of a network of individuals working in palliative care in the Asia Pacific originated with Dr Shigeaki Hinohara, a Japanese cardiologist. Dr Shigeaki Hinohara Patron • In 1995, he invited the 1st group of pioneers in hospice care to Tokyo. • After several meetings, in 1999 the group resolved to form an organisation, the Asia Pacific Hospice Palliative Care Network (APHN).

APHN

Legally registered in 2001 Secretariat in Singapore Run by Council of 20 Sector Representatives

Objective: To promote the development of hospice palliative care in the Asia Pacific region Prof Young-Seon Hong Chairman

27

28

14 Founding Sectors of the APHN Australia Hong Kong India Indonesia Japan Korea Malaysia Myanmar New Zealand Philippines Singapore Taiwan Thailand Vietnam

APHN Programs • • • • • •

Provides faculty to teach in resource poor countries. Training of trainers courses in Vietnam & Thailand. Clinical fellowships in palliative care. APHN Diploma / Flinders Graduate Certificate Course. Information service and directory of service providers. Travel bursaries to the Asia Pacific Hospice Conferences. • Consultancy for service development.

29

30

27

History of the Palliative Care Movement

The Asia Pacific Hospice Conferences • The first conference took place in Singapore in 1989. • Followed by the second in Singapore in 1996. • Since 1999, these have been organized by the different sectors of the APHN once every 2 years. • The conferences bring together palliative care practitioners throughout the Asia Pacific region. • Last conference Manila, September 2007. • Next conference: 8th Asia Pacific Hospice Conference Perth, Australia, September 2009. 31

Useful Resources Useful websites for information on hospice services, bursaries for travel or courses include: International Association for Hospice & Palliative Care: www.hospicecare.com Help the Hospices: www.helpthehospices.org.uk Hospice Information Service : www.hospiceinformation.info National Hospice and Palliative Care Organization: www.nhpco.org Asia Pacific Hospice Palliative Care Network: www.aphn.org 33

28

The Asia Pacific Hospice Palliative Care Network Dr Rosalie Shaw Executive Director APHN

Linking individuals & organisations…. Spinning a web…. 32

Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure

Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure F. Amos Bailey, MD University of Alabama at Birmingham School of Medicine Eric L. Krakauer, MD, PhD Harvard Medical School & Massachusetts General Hospital Objectives After the lecture, the trainees will be able to: 1. Describe the role of palliative care in congestive heart failure (CHF). 2. Describe the common physical symptoms and the common emotional, social and spiritual problems of patients with CHF. 3. Prescribe the best treatment to relieve symptoms associated with CHF. 4. Describe an interdisciplinary team approach to relieving psycho-social and spiritual distress. Content 1. Typical symptoms of patients with late-stage congestive heart failure (CHF): • Dyspnea • Pain in the chest, abdomen, and legs • Weakness • Fatigue • Edema • Insomnia • Anorexia • Wasting • Anxiety 2. Principles of palliative care for patients with CHF: 2.1. Disease-modifying and palliative care for CHF are inseparable and often indistinguishable. • With the exception of cardiac transplantation and a few other invasive interventions, almost all standard treatments of heart disease and CHF could be described as palliative. 2.2. The initial palliative care assessment and, if needed, intervention, should occur at the time of diagnosis or as soon as possible thereafter (Figure 1).2.3. Palliative care is applicable early in the course of congestive heart failure along with standard treatments such as:

Copyright © 2008 Massachusetts General Hospital. All rights reserved.

29

Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure

o Diuretic therapy o Angiotensin converting enzyme (ACE) inhibitors o Low dose beta blocker therapy 2.4. Palliative care is especially important in advanced CHF when symptoms may be severe and disabling and may not be adequately controlled by standard cardiac medications. o Dyspnea at rest or minimal exertion o Chest pain at rest or minimal exertion o Paroxysmal nocturnal dyspnea o Refractory lower extremity edema o Confined to bed or able to move only from bed to chair due to fatigue and/or above symptoms 2.5. Palliative care attends to distress from psychosocial or spiritual problems. • The physical symptoms of pain, dyspnea and fatigue make it difficult for CHF patients to be independent in their own self care. This dependence on others, particularly family, may lead to emotional distress, depression, financial difficulty for the patient and family. • Some patients and families may struggle to find reasons for the illness that has affected them. This search for meaning at the end-of-life is determined by the patient’s family and spiritual background and personal history. 2.6. A palliative care assessment or re-assessment is indicated whenever death in the next 6 months would not be surprising. • Prognosis is difficult to determine for patients with CHF. o Most patients with CHF are at risk for sudden cardiac death due to arrhythmia. o Others will survive for years with intermittent exacerbations. However, preventing or controlling physical symptoms may prevent crisis and improve quality and even quantity of life 2.7. After the patient’s death, palliative care provides bereavement support to the family. ******************************************************************************* Disease-specific treatment

PALLIATIVE CARE

Diagnosis

Bereavement Support

Death

Figure 1: Diagram of palliative care throughout the course of illness and bereavement.

Copyright © 2008 Massachusetts General Hospital. All rights reserved.

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Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure

3. Palliative care interventions for patients with CHF 3.1. Aggressive relief of pain and any other symptoms • Training patients and their families to use standard cardiac medications properly can improve symptom control. • Use of diuretics such as furosemide to prevent symptomatic fluid overload is a key to controlling dyspnea. • Determine a “dry weight” for the patient. Then arrange for the patient to be weighed daily on the same scale and adjust the diuretic dose upward or downward if the patient gains or loses more than 1 kilogram. In this way, both symptomatic fluid overload and dehydration can be avoided. • The use of low dose spironolactone 25 mg daily by mouth along with furosemide can improve survival. The reason for the survival benefit may be a reduction in risk of hypokalemia and thus of arrhythmias. • Use of an ACE inhibitor with a goal of low-normal blood pressure can improve symptoms and survival. However, some patients have allergic reactions or persistent cough with ACE inhibitor therapy, and some patients cannot tolerate ACE inhibitors due to renal insufficiency. • A cardiac-selective beta blocker such as carvedilol or metoprolol, started at a low dose and increased as tolerated, can help to prevent tachycardia, chest pain and arrhythmias. • Aspirin 81 to 325mg per day helps reduce acute coronary syndromes and other problems due to platelet aggregation. • Some patients with coronary artery disease and angina may benefit from nitrate therapy such as oral isosorbide dinitrate. However, nitrates often have side effects such as headache • When prescribing a CHF regimen, keep in mind complexity of the regimen and the availability and cost of medications. • When chest pain, dyspnea, or other symptoms are not controlled with the above strategies, low dose opioid therapy can be beneficial. o Opioid such as morphine can be given either intermittently of by-the-clock depending on the consistency and severity of the symptoms. • The patient and family should be educated or reminded about salt restriction and avoidance of tobacco and alcohol, particularly if the patient is not having an optimal response to standard medical therapy. 3.2. Non-pharmacologic interventions • An electric fan or a breeze from an open window can help to relieve dyspnea. • Proper positioning of the patient can reduce dyspnea and help to prevent pressure ulcers. For example, some patients will sleep better in an upright position. • Assistance with self care such as food preparation, bathing, or dressing can allow a patient to conserve energy for other activities. 3.3. Psychological and social supports: • Depression can occur when patients lose their strength, vitality, work, family roles, and control of bodily functions. • Open discussion about the psychological effects of the patient’s illness can be helpful, and patients can be helped to develop coping and reframing strategies. • Some patients may benefit from anti-depressant medication. • Some patients need help to access clinical services and to remain adherent to standard therapies

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Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure

for heart disease. • The patient’s family also can be helped to cope, both during the patient’s illness and during bereavement. Families can be encouraged to seek support from family and friends and from any spiritual support practices that are a part of the family’s beliefs. 3.4. Anticipation of potential future symptoms and psychosocial problems. • CHF typically has a relapsing and remitting course. Recurrences of dyspnea, pain, or other symptoms should be expected, and plans should be made to relieve them quickly whenever and wherever they occur, including in the home. • Some patients have a period of hours or days during which they are actively dying and need opioid and other therapies around-the-clock to relieve intolerable symptoms. • Despite excellent medical therapy for CHF, some patients experience sudden cardiac death. Some families, and even some patients, may wish to be informed of this possibility. Care should be taken in discussing bad news so as to minimize emotional distress for the patient and family. 3.5. Protection of the patients from unwanted or inappropriate medical interventions such as treatments that unduly sustain life. • Life-sustaining treatments such as mechanical ventilators, non-invasive ventilatory support, and hemodialysis are becoming more available in Vietnam. o These treatments can save lives but also can cause pain and suffering. o As these treatments become more available, decisions will be required more frequently about the relative benefits and burdens of specific life-sustaining treatments for individual patients. o In end-stage heart disease, these interventions have a low likelihood of benefit and are not routinely recommended. • Palliative care never intends to hasten death, but it also does not try to unduly prolong the dying process. 3.6. Comprehensive palliative care is best provided by an interdisciplinary team with the patient at the center. Ideally, the team should include: • Healthcare workers: o Physician (or Assistant Physician in some settings) o Nurse o Community health workers • Family members o Will require training and psychosocial support • Peer supporters and/or volunteers o May require training.

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Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure

Daily evaluation questions 1. Since most treatment for heart disease is not curative, it could be considered palliative care. True False 2. Palliative care in end-stage heart disease would: a. Maximize the effectiveness of standard treatment for CHF. b. Use daily weight measurement and adjust medications as needed. c. Use opioids for intractable symptoms. d. All of the above. e. b and c only 3. Standard therapy for CHF includes several classes of medication including angiotensin converting enzyme inhibitors, beta blockers, aspirin, and _______________. Diuretics 4. Depression, which is common in patients with heart disease, a. negatively impacts quality of life. b. has no effect on adherence to treatment. c. can be trated with anti-depressant medication. d. a and c e. All of the above

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Palliative Care for Patients with Heart / Lung Disease Part A: Congestive Heart Failure

References (Suggested reading) Pantilat SZ, Steimle AE Palliative care for patients with heart failure JAMA. 2004; 291:2476-82. References for writing the lecture Bhatia, R.S., Tu, J.V., Lee, D.S., et.al. (2006). Outcome of Heart Failure with Preserved Ejection Fraction in a Population-Based Study. New England Journal of Medicine, 355 (3), 260 -269. Birks, E.J., Tansley, P.D., Hardy, J. (2006). Left Ventricular Assist Device and Drug Therapy for the Reversal of Heart Failure. New England Journal of Medicine, 355 (18), 1873-84. Curtis, J.R., Rubenfeld, G.D. (2005). Improving Palliative Care for Patients In The Intensive Care Unit. Journal of Palliative Medicine, 8 (4), 840-854. Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine ,3nd ed. Oxford: Oxford University Press, 1998. End-of-Life Physician Education Resource Center. Available at http:/www.eperc.mcw.edu Innovations in End-of-Life-Care (electronic journal). Available at http:/www.edc.org/lastacts/ International Society of Nurses in Cancer Care. End-of-Life Nursing Education Consortium (ELNEC) Project. Available at http:/www.aacn.nche.edu/elnec Last Acts. Available at http:/www.lastacts.org Pantilat SZ, Steimle AE Palliative care for patients with heart failure JAMA. 2004; 291:2476-82. Qaseem A, Snow V, Shekelle P, Casey DE Jr, Cross JT Jr, Owens DK. Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians.Ann Intern Med. 2008 Jan 15;148(2):I42 Thomas, J.R., von Gunten, C.F. (2003). Management of Dyspnea. Journal of Supportive Oncology, 1 (1), 23-34. World Health Organization. National Cancer Control Programmes: World Health Organization. Palliative Care: Symptom Management and End-of-Life Care / Integrated Management of Adolescent and Adult Illness. Geneva: World Health Organization, 2004.

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Palliative Care for Patients with Heart / Lung Disease Part B: Chronic Lung Disease

Palliative Care for Patients with Heart / Lung Disease Part B: Chronic Lung Disease F. Amos Bailey, MD University of Alabama at Birmingham School of Medicine Eric L. Krakauer, MD, PhD Harvard Medical School & Massachusetts General Hospital Objectives After the lecture, the trainees will be able to: 1. Describe standard treatment for chronic obstructive pulmonary disease (COPD). 2. Describe the role of palliative care for patients with end-stage lung disease. 3. Prescribe the best treatment regimen for patients with end-stage chronic lung disease and dyspnea. 4. Discuss ethical issues in the palliative care of patients with end-stage lung disease. Contents 1. Chronic Obstructive Pulmonary Disease (COPD) 1.1. COPD is the most common cause of end-stage lung disease. 1.2. This condition is due to loss of lung tissue and obstruction of airflow on exhalation. Air becomes trapped in the damaged lung, areas of the lung are no longer ventilated, and the lung volumes increase. As lung damage progresses, blebs or large areas of non-ventilated “dead space” develop. All of this results in decreased expiratory flow rates (decreased forced expiratory volume in one second or FEV1). Ultimately this illness can progress to chronic hypoxia and hypercapnia, pulmonary hypertension, right heart failure, chronic and acute respiratory failure and death. 1.3. The most common cause of this illness is smoking. Air pollution also plays an important causative role. 2. Restrictive Lung disease 2.1. Interstitial lung diseases such as idiopathic pulmonary fibrosis and sarcoidosis cause inflammation and scarring of the lung. When severe, this results in decreased expandability or stiffness of the lungs (restriction), impaired gas exchange, and dyspnea. Some interstitial lung diseases, including sarcoidosis, can cause both restrictive and obstructive lung disease.

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Palliative Care for Patients with Heart / Lung Disease Part B: Chronic Lung Disease

2.2. Interstitial lung disease may be immune mediated or due to environmental exposures to inhaled pollutants. Examples of the latter are silicosis and asbestosis. 2.3. As interstitial lung disease progresses, both chronic and acute respiratory failure may occur. 3. Differential diagnosis of chronic lung disease 3.1. Destruction of pulmonary tissue may be caused by many diseases in addition to those mentioned above. These include primary or metastatic cancer, chronic or recurrent infections such as bacterial pneumonia, pulmonary tuberculosis (TB), or recurrent OI’s such as pneumocystis carinii pneumonia (PCP) or fungal pneumonia. 3.2. All can lead to progressive destruction of lung tissue and impairment of pulmonary function and result in chronic and acute respiratory failure and death. 3.3. Other conditions that cause chronic dysnea can mimic chronic lung disease. These include chronic pulmonary edema due to left-sided congestive heart failure or oliguric renal failure and severe asthma. Often patients have multiple causes of lung disease or dyspnea. 4. Prevention of chronic lung disease 4.1. Prevention of chronic and life-threatening illnesses including HIV/AIDS, cancer, and chronic lung disease is an important task for healthcare workers at all levels and in all fields including palliative care. 4.2. Chronic lung diseases can be prevented in many ways: • COPD and lung cancer, as well as other cancers, can be prevented by educating patients and the public about the danger of smoking, encouraging young people not to smoke, and encouraging those who do smoke to stop. o Even though COPD is not cured by smoking cessation, the rate of progression of the disease to death is slowed dramatically. o Patients can be aided to stop smoking with counseling and psychological support, particularly during nicotine withdrawal. o Smoking cessation programs that combine counseling, peer support, and nicotine therapy have been shown to be effective in rich countries. • Early diagnosis and treatment of infectious diseases such at TB and OI’s associated with HIV/AIDS can greatly reduce lung damage. • Air pollution and environmental lung toxins such as silicon and asbestos can both cause and exacerbate chronic lung disease. Therefore, public health initiatives are needed to: o Educate the public about the dangers of air pollution o Advocate for reduction of exposure of workers and the public to air pollution and environmental lung toxins.

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Palliative Care for Patients with Heart / Lung Disease Part B: Chronic Lung Disease

5. Approach to the patient with chronic lung disease 5.1. Dyspnea, the subjective sensation of breathlessness, is common in chronic lung disease. Although pain, anorexia, fatigue and many other symptoms also are common, dyspnea is often the most disabling. Dyspnea often causes extreme distress, anxiety. Thus, it is imperative to relieve dyspnea effectively to improve the quantity and quality of life of individuals living with advanced chronic lung disease. (See syllabus on “Dyspnea Assessment and Treatment”.) 5.2. A Functional Dyspnea Scale can be used to quantify the severity of chronic lung disease • 0 = No dyspnea • 1 = Dyspnea when walking up incline • 2 = Dyspnea when walking on level • 3 = Dyspnea when moving from bed to chair or with other minimal activity • 4 = Dyspnea at rest • Patients with a Functional Dyspnea Score of 3 or 4 have very limited function, will have the most limited prognosis, and would benefit most from aggressive palliative care interventions. 6. Palliative treatment for patients with chronic lung disease 6.1. There is no contradiction between standard, disease-modifying treatment of COPD and other chronic lung disease and palliative care. The best treatment plan for any patient may include diseasemodifying therapy, curative treatment for acute complications, and palliative care. • In the later stages of chronic lung disease, many patients will have an increasing need for palliative care including comprehensive symptom control and psychosocial support. 6.2. Consider treating any potentially treatable cause of dyspnea such as pulmonary TB (which can mimic chronic lung disease), COPD exacerbation, pneumonia caused by bacteria, fungus, virus, or parasite, pleural effusion, etc. • With such treatment, the patient often feels better and has improved quality and quantity of life. In addition, for contagious diseases such as pulmonary TB there is the public health benefit of reduction of transmission to health care workers and the community. 6.3. Standard treatments for COPD: • Beta-agonist such as albuterol: o Long-acting beta-agonist (salmeterol) in combination with inhaled corticosteroid for maintenance therapy. o Short-acting beta-agonist via inhaler for mild exacerbations o Short-acting beta-agonist via nebulizer for more severe exacerbations • Anticholinergic such as ipatropium via inhaler or nebulizer • Corticosteroid: o Inhaled as maintenance therapy only. Not for acute exacerbations. o Oral or intravenous corticosteroid for exacerbations or for comfort in dying patients. ƒ Chronic oral steroid should be used only in patients with very severe disease because of serious side effects with prolonged use.

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Palliative Care for Patients with Heart / Lung Disease Part B: Chronic Lung Disease

In patients with very severe disease or with only a few months to live, the benefits of chronic corticosteroids may justify the risk of side effects. Oxygen therapy: o As chronic therapy for patients with chronic hypoxia (Pa02