Original Article

Spiritual Needs and Spiritual Care for Veterans at End of Life and Their Families

American Journal of Hospice & Palliative Medicine® 29(8) 610-617 ª The Author(s) 2012 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909111434139 http://ajhpm.sagepub.com

Bei-Hung Chang, ScD1,2, Nathan R. Stein, PhD1, Kelly Trevino, PhD3,4, Max Stewart, BA1, Ann Hendricks, PhD1, and Lara M. Skarf, MD1

Abstract Spiritual care is an important domain of palliative care programs across the country and in the Veterans Affairs (VA) Healthcare System specifically. This qualitative study assessed the spiritual needs, spiritual care received, and satisfaction with spiritual care of both Veterans at the end of life and their families. Seventeen Veterans and 9 family members participated. They expressed a wide range of spiritual needs, including a wish of Veterans to have a better understanding of traumatic events that occurred during their combat experience. Some Veterans reported military experience enhanced their spirituality. Generally, respondents reported satisfaction with VA spiritual care, but indicated that Veterans may benefit from greater access to VA chaplains and explicit discussion of the impact of their military experience on their spirituality. Keywords spirituality, spiritual needs, spiritual care, care satisfaction, Veterans, palliative care, family caregivers

Introduction Addressing spiritual issues in patient care is important, particularly among those with terminal illness and at the end of life.1 This importance is reflected in the prominence of spiritual care in palliative care practice guidelines. In 2004, the National Consensus Project identified spiritual, religious, and existential aspects of care as 1 of the 8 clinical practice domains for quality palliative care.1 In 2009, new guidelines for spiritual care in palliative care programs were built upon the National Consensus Project guidelines.2 Spiritual care has been a main component of palliative care in the Veterans Affairs (VA) Healthcare System since 1996.3 More recently, the VA established palliative care consult teams to provide comprehensive management of Veterans’ needs, including spiritual needs, at the end of life.4 Research suggests that provision of spiritual care at the end of life is associated with positive outcomes. For example, in a sample of long-term care residents, patients who received spiritual support and care reported receiving better overall care at the end of life.5 In addition, patients whose spiritual needs were not met gave lower ratings for the quality of care.6 Spiritual care was also found to be associated with better quality of life for patients with cancer at the end of life7,8 Research on the definition and content of spiritual care from the perspective of care providers demonstrates its multifaceted nature. Health care providers reported that being present, having a trusting and intimate relationship, having strong communication between health care providers and patients/family, co-creating (a mutual activity among patients, family members,

and caregivers created for the care of patients), and sharing are aspects of spiritual care.9,10 Nurses reported providing a range of spiritual care to patients including arranging visits by the hospital chaplains, showing kindness, spending time with patients, giving support, listening to patients, allowing them to discuss fears, anxieties, and troubles.11 Research on the spiritual needs and spiritual care received from the perspective of patients and their families also reflects the complexity of spiritual care. Patients at the end of life and their families report needing religious activities, companionship, love, meaning and purpose, involvement and control, and time to finish important business.12–14 A meta-study of qualitative research on spiritual care in end of life and pallitaive care stated that spiritual care is expressed in the way care, including physical care, was given through a focus on presence, journeying together, listening, connecting, creating openness, and engaging in reciprocal sharing.10 Despite the focus on spiritual care in the VA, research on the spiritual needs and experiences of spiritual care of Veterans at

1

VA Boston Healthcare System, Boston, MA, USA Boston University School of Public Health, Boston, MA, USA 3 Dana Farber Cancer Institute, Boston, MA, USA 4 Harvard Medical School, Boston, MA, USA 2

Corresponding Author: Bei-Hung Chang, ScD, 150 S. Huntington Avenue (152H), Boston, MA 02130, USA Email: [email protected]

Chang et al the end of life and their families is limited. This gap in the literature is notable for multiple reasons. First, approximately 1 out of 4 Americans who die is a Veteran (0.66 million out of 2.44 million in 2009).15,16 Second, studies suggest that Veterans have unique spiritual needs due to their military experience.17 In particular, the need to work through guilt for killing in war can resurface at the end of life for some Veterans.18 Finally, Veteran and family perspectives of spiritual care received and unmet spiritual needs can inform evaluation and improve palliative care. Spiritual care is an essential component of quality care, especially in palliative care. Previous studies have examined health care providers’ views and experiences of spiritual care, but few focused on palliative care from the perspectives of patients and family. Further, researchers have not extensively investigated the views of Veterans and their family. Most importantly, studies that simultaneously examine spiritual needs, spiritual care received, and satisfaction with the received care from the perspectives of patients and their families do not exist. The purpose of this qualitative study is to explore the perspectives of Veterans receiving VA palliative care and their families in the 3 aforementioned areas.

Methods Participant Eligibility and Recruitment We recruited patients who received palliative care in acute and long-term care units at the VA Boston Health Care System (VABHS) and had a life expectancy of less than 12 months based on the clinician’s estimate. We excluded patients who were unable to communicate verbally or understand the interview questions. After recruiting the patients, we asked each to identify a family member or friend caregiver who might be willing to participate in the study. We also recruited family members of patients who met the inclusion criteria but were unresponsive (eg, in a coma) through referral from the palliative care team. The Internal Review Board (IRB) of the VABHS approved the study protocol.

Participant Characteristics We interviewed 17 Veterans and 9 family members. The Veterans were all male and caucasian, with an average age of 70 years (ranging from 58 to 94 years). Fifty-three percent completed college and 47% completed high school. Nearly half of these Veterans were Catholic, 40% were Protestant, 1 was Jewish, and 1 endorsed having no religious affiliation. Seven Veterans considered themselves to be religious, while the others considered themselves to be not religious or spiritual (n ¼ 6), not religious but spiritual (n ¼ 3), or did not respond (n ¼ 1). Four of the 9 family members were Veteran spouses, 3 were siblings (brothers), and 2 were children (1 son and 1 daughter). These family members were all caucasian with an average age of 56 years (ranging from 38 to 75 years). Five (56%) of the family members were Catholic, 3 (34%) were Protestant, and

611 1 was Jewish. A majority of family members considered themselves religious, spiritual, or both. Only 2 indicated that they were not religious.

Procedure Veterans and their family were asked 10 open-ended questions (see Appendix A). Both groups of participants were instructed to answer the questions in regard to their own spiritual needs and care. Veterans were asked an additional question regarding the effects of military experience on their spirituality. In some instances, the interviewer asked follow-up questions to increase clarity. The average interview lasted approximately half an hour (range: 15-45 minutes).

Analysis The interviews were recorded and transcribed. Analyses were based on a grounded theory method that involved reading the transcriptions line by line, initial coding of each interview, reducing initial codes into categories, and deriving themes from the categories.19 Two authors (B.-H.C. and N.S.) independently coded the interviews. They then discussed and resolved discrepancies to agree on final themes for each question. Although we derived the themes from patient and family interviews separately, we decided to combine data from Veterans and family members due to the substantial overlap.

Results Meaning of Spirituality Participants were asked to describe the meaning of spirituality and list their spiritual activities. Some of the responses were related to religion, such as learning more about their religion, praying, going to church/religious services, reading bibles, listening to religious tapes, believing in God/a higher power, and believing in an afterlife. I use the serenity prayer a lot, you know, that goes with me, it’s like me and the serenity prayer are like inseparable. I probably say it 100 times through the course of the day.

Other responses were related to relationships with others, such as forgiving others, connecting with others, and doing good deeds/helping others. Some respondents described spending time with family as spiritual. It’s one of those things you want to spend a little more time with them (his grandchildren), take them fishing or, you know, just throw rocks in a pond. I guess that’s part of spirituality to me.

Searching for truth/meaning was also mentioned, which is a definition of spirituality often found in the literature.20

612 Search for truth. Search what’s right and wrong. We have to go to someone who knows more than we do often times because it’s not an easy subject.

Others stated that spirituality is the foundation of life, which guides how to live life.

American Journal of Hospice & Palliative Medicine® 29(8) compassion and assistance with his current situation. A family member expressed the need to be loved. . . . Just to be loved and to love . . . Just to cry with me. I’m strengthened by the prayers of my friends and they are praying.

Some indicated the need for a conversation with others. It’s not so much whether I believe in God or not or anything like that, it’s more or less how I live my life.

One Veteran answered that he fought 2 wars, which he considered to be spiritual.

Spiritual Needs Some of the spiritual needs reported by the Veterans and their family were in the context of religion including prayers, religious rituals (eg, communion, confession), and religious reading. I take all the prayer I can get. I probably want communion if anything.

Some of the needs were related to divine intervention, such as to have God/a higher power answering prayers, healing cancer, and prolonging life. The response of 1 Veteran demonstrated his reflection on the content of his prayer. The other night I was saying well, God if you get me through this every time I see someone on the street corner, I’ll give them a buck. But that’s sort of blackmailing anyway.

This response suggests that the content of prayer may be important in the spiritual care of Veterans at the end of life. Some Veterans expressed a need to reconnect to their religion. I want to get back with what God meant to me, you know, if you will, what Jesus meant to me.

Other needs reported by Veterans and their families were related to interpersonal relationships. A family member expressed the need to spend time with the patient. Being able to spend more time with him and just converse with him about what’s really going on. And what is in store for him.

A Veteran articulated the need to be surrounded by religious people in a spiritual setting. My spiritual needs at this stage in my life [are] to be in as strong and as spiritual a setting as I can be in surrounded by my Christian brothers and sisters and doctors too and that’s being provided at the VA.

Support, compassion, love, and respect were other reported spiritual needs. A Veteran described his spiritual needs as

Sometimes it helps just to talk to someone. . . . to get out of your own mind and just to talk.

Some needs were related to gaining an understanding and knowledge about life questions and guidance in taking care of the patient. I am seventy seven so I can see the age is the cliff coming up. And wonder what on the other side. . . . I’d rather solve it (the question) myself, find my own answers.—Veteran Just pretty much guide me on the next step. I mean I know what I did was the right thing and for good or for ill . . . I know that I did my best to take care of him (patient).—Family

When asked about his spiritual needs, one Veteran replied: I just don’t understand why I was so damn lucky. I came down with hepatitis and because I couldn’t fly my crew got shot down. [Interviewer: You felt bad about it?] Veteran: ‘‘Yes.’’

Although not explicit, the responses from this Veteran seemed to indicate the need to work out his guilt from the event that happened during the war. The types of spiritual needs expressed by the family members were similar to those of patients, but their needs were usually in relation to the patient rather than about themselves. I just want him to get better so he’ll be able to participate in the things we’ve done together forty-eight years. I have really focused a lot on prayer and requesting prayer from everyone and just any source that I could possibly get to give us the strength that we need right now to help my Dad get through what he’s getting through.

In summary, the spiritual needs reported by Veterans and their families can be grouped into religious activities (eg, prayers, religious, and rituals), interpersonal relationships (eg, spending time with family), acts of human kindness (support, love, and compassion), and spiritual intervention (eg, have God/ higher power answer prayers or cure diseases, guidance).

Spiritual Care Received in the VA The spiritual care Veterans and their families reported receiving in the VA included warmth/comfort/support, someone to listen to/ talk to, genuine connection, prayers, religious rituals (last rites, communion), religious services (mass), consolation about past events, information/knowledge, visits from chaplain and clinical staff, and a comfortable setting. This spiritual care

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generally matched the spiritual needs described by the Veterans and their family. The following quotations from Veterans highlight the spiritual care provided by the chaplain.

Veterans reported that they received spiritual care from people other than chaplains. When asked who provided spiritual care to him, 1 Veteran stated that it was his doctor.

It’s nice, somebody stops in and sounds sincere when they say how you doing.

I don’t think of it necessarily as spiritual, because he (a doctor) never really talked about it so much in a sense of spiritual care. I felt there was an aspect of spirituality about him. His influence on me was because he just gave, he seemed to care so much.

Since I’ve been here, I’ve run into one, two, three, something like four different people (chaplains) from—I assume they’re all from different churches or different groups or whatever, that have been in to talk to me, and they all say prayers with me, and I let them. I ask them for it, because it’s kind of what helps me get through my day.

Family members also reported benefiting from visits from chaplains. It’s been helpful to have him (chaplain) come by periodically and just, you know, talk about everyday things. . . . having someone there like that, that you know, rely upon to, you know, discuss your feelings with, yeah it’s been helpful. A sympathetic ear and just listen acutely and then just get a feel for what the family really needs. . . . Just being with you and just saying things are alright and just let you talk. Sometimes they don’t even have to say a thing.

Family members also indicated that chaplains provided religious rituals to patients. He (the Rabbi) blessed him (patient) a couple of times and said a blessing prayer over him, so I feel that he’s more comfortable too.

Several Veterans reported that they resisted the visits from the chaplain initially. However, the persistence of the chaplains resulted in the establishment of a good relationship. The father was around here, came around one time. You know, he helped me out a little bit. I talked to him, you know, I was kind of rude to him the first couple of times. And I apologized to him, and we got to get to know each other and everything is cool, you know.

One Veteran included the comfortable physical setting in the spiritual care provided by the VA. Being put in a nice room that friends can come to visit comfortably.

Spiritual Care Providers Although some Veterans and family said that only chaplains can provide spiritual care, others indicated that spiritual care can be provided by clinical staff or even family and friends. Some indicated that anyone who shows concern or has the expertise can provide spiritual care, including chaplains, doctors, nurses, social workers, and psychologists. Indeed, some

Another Veteran answered that he received spiritual care from family members as well as the chaplain. I have people that I can talk to and I have my family and my mother and my brother and my sisters and I’ve been talking to the Catholic Chaplain.

Satisfaction With Spiritual Care Received In general, Veterans and family were quite satisfied with the spiritual care they received in the VA. The following comments from Veterans and family reflect this strong satisfaction. They have met my needs as best they can. I am perfectly happy here.—Veteran I am very very happy (with the care he received). Nothing unsatisfied.—Veteran I was not dissatisfied with anything. I was satisfied with everything.—Family

The aspects of spiritual care that were particularly satisfying were related to the nature of the care (responsiveness/attentiveness, sincere/genuine), the characteristics of the care providers (commitment, persistent, prompt), the style of care (not pushing), the content of the care (support, guidance), and the overall care experience. Many Veterans and family members stated that the characteristics of the chaplains contributed to their satisfaction with the spiritual care they received. [I] probably like the commitment. I just do know that I appreciate the fact that they come back and they remember who I am. I’d say the Chaplain himself. He comes in and he usually turns around and makes your day a little bit better and he’s pretty smart.

One family member praised all the clinicians and staff in the hospital. The feeling that these people have is spiritual for me. They treat him (patient) like a king, like it’s their father and they want him to get better. Doctors, nurses, even the people that sweep the floors . . . I mean they’ve just been awesome.

Another family member commented on the promptness of the chaplain in responding to the request for visits.

614 The chaplain service has always been excellent. Anytime I’ve asked for a priest to come in and bless him (patient), they are there within a day.

The content of the spiritual care was also mentioned as satisfying. I’ve been most satisfied with the support and the encouragement, and just the daily support.

Dissatisfaction With Spiritual Care Received Few Veterans and family expressed dissatisfaction with the spiritual care they received. Although many Veterans and family praised the chaplains, 1 Veteran questioned the blessing he received from a chaplain. I’d say when the Priests come in and he gave me this blessing. He told me I was on my way to heaven somehow I don’t think it’s that easy. He doesn’t know what I did. I could have murdered someone around the corner and he wanted to give me a blessing.

Some Veterans and family members would like the chaplain to visit more often and spend more time with them; although many recognized that chaplains have many patients and their time for each patient is limited. When asked about the aspects of spiritual care they were least satisfied with, a number of Veterans and family reported dissatisfaction with the medical care they received. Unsatisfactory care included poor bedside manner, a lack of information provided regarding medical conditions and treatment, poor follow-up with issues, and rough needle insertion from the nurse. Although these aspects of care are not typically viewed as spiritual care, the responses from Veterans and their family suggests that medical care and spiritual care may be closely related for Veterans at the end of life.

Impacts of Military Experience on Spirituality Many Veterans stated that their military experience had profound effects on their spirituality. Even those without combat experience commented that they noticed that military service has deeply affected other Veterans. One Veteran clearly indicated that military experience is about as nonspiritual as it could get. One Veteran was emotionally disturbed when asked about the impact of the military experience on his spirituality. I can’t go on with this question. It hurts. I don’t want to—I don’t want to relive it. I don’t want to go through it. I don’t care if I’ve got PTSD, I don’t want to do anything about it, just leave me alone.

Another Veteran requested to close the interview room door when asked about the impact of his military experience on his spirituality. He indicated that his spirituality was still deeply affected by his military experience.

American Journal of Hospice & Palliative Medicine® 29(8) Service to your country involves sacrifice far beyond what you ever could contemplate or subject yourself to. Before they entered the service, [service members] had the same rational ideas about life and spirituality that you and I do. But somehow their service experience drastically affected that, to their own detriment. And it makes you wonder how God could allow that to happen.

Some Veterans however reported that their military experience strengthened their spirituality, enhanced compassion, compelled them to reflect on the fragility of life, and right and wrong, gave guidance in life, and made them pray more. It (the military experience) opened up the big world of different ideas and from all kinds of people. It broadened it (spirituality). I think it strengthened it (spirituality). I felt more compassionate. I just (don’t) understand why I was so damn lucky. I know patients have talked to me that they said that other men were good men and they don’t understand why they got killed or injured. As I got older and more mature I had a lot more to talk to God about and I started speaking to God on a regular basis and I guess I have to be thankful to him for the way things turned out. I didn’t get shot. I didn’t get killed. People around me did.

Discussion Our qualitative study provides insights into spirituality, spiritual needs, and spiritual care in a VA palliative care setting from the perspectives of Veterans and their families. The difference between religiosity and spirituality has been widely discussed in the literature. Religion is commonly defined as an organized system of beliefs, practices, rituals, and symbols designed to facilitate closeness to a higher power or God, while a common definition of spirituality is the personal quest for meaning of life.21 Many of the participants in this study defined spirituality in the context of religiosity. Others defined spirituality with a secular nature that is not related to a certain religion. These definitions are consistent with the view that spirituality is broader than religiosity but can be expressed through religion.22 One unique definition of spirituality reported in our study sample is spending time with family, which is likely to be important for those who are at end of life and for their loved ones. Another unique definition reported by a Veteran is ‘‘fighting in wars.’’ The Veteran commented that the military experience made him more spiritual and compassionate to others. The spiritual needs and spiritual care reported by the Veterans and their families cover the conceptual themes of spiritual care and types of spiritual activities identified by other studies including religious rituals, interpersonal relationships, support, conversations, and guidance.23–25 In addition to these spiritual needs that are common with nonveterans, the Veterans also expressed the need to process guilt related to combat experiences. This unique need reported by Veterans is consistent with

Chang et al the observation of the VA chaplains described in another qualitative study.18 Veterans in this study recognized the impact of the military experience on spirituality, consistent with research on chaplains providing spiritual care in the VA.18 While many Veterans had difficulty describing the relationship between their military experience and spirituality, their emotional reaction to some of the questions suggests that a strong relationship exists. This finding highlights the importance of addressing the particular spiritual needs for Veterans who suffer from traumatic events in the military. However, Veterans also stated that their military experience positively impacted their spirituality, such as becoming more compassionate and broadening their life experience. These findings suggest that the relationship between military experiences and spirituality is complex and multidimensional. This study also identified areas for improving the quality of spiritual care. In general, Veterans and families reported a high level of satisfaction with the spiritual care they received in the VA. However, a few requested more frequent and longer visits from the chaplains. Veterans Affairs chaplains have also expressed a similar concern, stating that they would like more time to work with Veterans.18 The consistency of this finding indicates that increasing the number of chaplains could improve the quality of care in the VA. This study suggests that some Veterans may require persistent efforts from chaplains before they are ready to accept spiritual care. Finally, the way in which medical care is provided may impact Veterans’ and families’ satisfaction with spiritual care. Educating health care providers on provision of patientcentered care and its impact on spiritual well-being may enhance spiritual care of Veterans at the end of life. More directly, training health care providers in provision of spiritual care is important since some Veterans perceive that all health care providers can provide spiritual care. This study provides insights into the perspectives of Veterans at the end of life and their families on the nature of spirituality and spiritual care needs and suggests ways to improve the quality of spiritual care. In many ways, Veterans and their family reported similar spiritual needs and spiritual care received as those reported in nonveteran studies. However, Veterans also have unique spiritual needs due to their military experience.

Future Directions Our study findings can be used to develop a spiritual need and spiritual care scale to be used for Veterans and for other patients who have a terminal illness and their families. The Veteran and nonveteran versions can be distinguished by whether a question about the effects of military experience on spirituality is included. The scale can then be used as an instrument to study the spiritual needs and spiritual care and their relationship with outcomes of care (eg, quality of care and quality of life), which can ultimately help to improve quality of care.

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Appendix A Patient Interview Questions (Probe will be given only when the participants cannot answer the question.) 1.

What does spirituality mean to you?

Probe: Some people consider spirituality is related to the search of meaning and purpose of life. Some people practice spirituality by attending church or religious services, praying to God or a superpower, meditating, chanting, or doing spiritual reading, being compassionate, forgiving, or connected to nature. Everyone has their own definitions. What about your definition and what do you do in life that you consider being spiritual? 2.

3. 4. 5. 6.

7. 8.

Some people distinguish between being spiritual and religious. Do you consider yourself being religious? Could you explain why? What are your spiritual needs at the current stage of your life? What does the spiritual care mean to you? What spiritual care that you would like to receive in the VA? Please describe the spiritual care or support you receive while you are receiving health care in the VA? Who can provide this spiritual care to you? How is this spiritual care initiated? What kind of spiritual care or support you would like to receive in the VA that you have not received? In what format and setting would you like the VA health care staff, to provide you with spiritual care and support?

Probe: For example, regular group spiritual activities such as prayer, meditation, spiritual script reading; or individual activities such as regular visit of chaplains or other health care providers who can provide you with spiritual comfort and prayer with these spiritual care providers. 9.

From which VA health care staff you would like to receive these spiritual cares?

Probe: For example, chaplains, doctors, nurses, social workers, or psychologists? 10. 11.

What aspects of the spiritual care you received in the VA were you most satisfied with? Least satisfied with? Did your military experience affect your spirituality? If yes, how? Does it still affect you, especially at this stage of your life? If yes, how?

Family Interview Questions (Probe will be given only when the participants cannot answer the question.) 1.

What does spirituality mean to you?

616 Probe: Some people consider spirituality is related to the search of meaning and purpose of life. Some people practice spirituality by attending church or religious services, praying to God or a superpower, meditating, chanting, or doing spiritual reading, being compassionate, forgiving, or connected to nature. Everyone has their own definitions. What about your definition and what do you do in life that you consider being spiritual? 2. Some people distinguish between being spiritual and religious. Do you consider yourself being religious? Could you explain why? 3. What are your spiritual needs at the current stage of your life when your husband/father/wife/friend . . . are terminally ill and are near the end of life? 4. What does the spiritual care mean to you? 5. What spiritual care that you would like to receive in the VA as a family member/friend of your husband/father/ wife/friend . . . who is receiving care at the VA? 6. Please describe the spiritual care or support you receive while your husband/father/wife/friend . . . are receiving health care in the VA? Who provide this spiritual care to you? How is this spiritual care initiated? 7. What kind of spiritual care or support you would like to receive in the VA that you have not received? 8. In what format and setting would you like the VA health care staff to provide you with spiritual care and support? Probe: For example, regular group spiritual activities such as prayer, meditation, spiritual script reading; or individual activities such as regular visit of chaplains or other health care providers who can provide you with spiritual comfort, and prayer with these spiritual care providers. 9. From which VA health care staff you would like to receive these spiritual cares? Probe: For example, chaplains, doctors, nurses, social workers, or psychologists? 10. What aspects of the spiritual care you received in the VA were you most satisfied with? Least satisfied with? Acknowledgments We appreciate the time the Veterans and their family spent in the interview in providing the information for the study. We also thank the palliative care team at the VA Boston Healthcare System for their assistance in recruitment.

Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development, Health Services

American Journal of Hospice & Palliative Medicine® 29(8) Research and Development Services: PPO-10107. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.

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