Promoting Excellence : ESRD Table of Contents : ESRD Patients and Family Members on Death and Dying

Summary of Findings from the ESRD Quality of Dying Work Group Focus Group Project

Conducted by
Lake Snell Perry & Associates
Authored by Susan Kannel

As part of its Quality of Dying Project, the ESRD Workgroup hired Lake Snell Perry & Associates (LSPA) to conduct a series of focus groups with ESRD patients and family members of deceased ESRD patients about end-of-life issues. Group participants discussed their feelings and experiences around planning for and talking about death and dying. They also explored what role healthcare professionals and institutions – and dialysis units in particular – can and should play in helping ESRD patients and families deal with these issues. Lastly, participants discussed the concept of palliative care and explored what factors contribute to quality of dying.

A total of six groups were held in three diverse sites, as shown in Table One. In each site, one group was conducted with ESRD patients and another with family members of recently deceased ESRD patients. The groups were racially and ethnically diverse; the voices of African-Americans, Hispanics, and Caucasians were all included. The patient groups were composed of people of different ages and varying medical conditions. Likewise, the family groups were composed of a range of spouses, parents and children of ESRD patients.

Table One
Location Date Participant Description
Columbia, Missouri 7.24.01
White Family Members
Mixed Race (mostly White) ESRD Patients
Carrboro, North Carolina 9.20.01
African American Family Members
African American ESRD Patients
Denver, Colorado 11.28.01
Hispanic (English Speaking) Family Members
Hispanic (English Speaking) ESRD Patients

This executive report summarizes the findings of this research effort. More detailed findings, as well as additional quotes from participants, are available in the individual site reports on file with the Promoting Excellence in End-of-Life Care office in Missoula, Mont.

The report begins by reviewing some important contextual factors including participants’ general opinions about the disease and the healthcare that they (or their loved-ones) received. Then, we discuss their experiences with and feelings about end-of-life planning issues and what role they feel healthcare providers can and should play in end-of-life planning. Lastly, we discuss hospice care, palliative care, and participants’ views of what factors contribute to quality of dying.

A Note about Education, Experience, and Priming

One of the major underlying findings of this study is that education level and personal experience strongly affect how participants think and feel about these issues. Specifically, these factors shape people’s willingness to discuss end-of-life issues, and their openness to the involvement of healthcare professionals in end-of-life planning.

Education, in this case, entails both education generally – that is, the amount of schooling – as well as more issue-specific knowledge. Relevant knowledge areas include knowledge about ESRD specifically – its prognosis and treatments – and familiarity with the workings of the healthcare system more broadly.

Experience also shapes attitudes. Older and sicker patients, and those who have had setbacks, tend to be more comfortable talking about end-of-life issues. Family members, by virtue of having gone through the death of a loved-one, also tend to be receptive. In general, participants who have had very positive or negative experiences with a loved-one’s death are especially attuned to the topic at hand. For example, those who have witnessed a difficult end-of-life situation in which the patient’s preferences were unknown felt more urgency about these issues than others. Lastly, participants’ familiarity with hospice care and its tenets influence their mind-set.

Another factor that seems to have shaped these findings has to do with self-selection and priming. Ideally, focus group participants are selected at random and given little information about the group topic. That way, those who are resistant to a topic are less likely to decline, and participants are not able to “prime” themselves by thinking about the topic before the group session.

But given the sensitive nature of these focus groups, participants were informed about the subject matter during recruitment. This was done differently, and to different extents, in the three sites. In the first groups in Missouri, participants – and patients in particular – were given relatively little information. They were simply told they would be discussing “issues about their care, including death and dying.” Participants in North Carolina were given more detailed information about the group topic. In Colorado, an experienced nephrology social worker recruited the participants. Thus, many Colorado participants had extended conversations about the issues at hand during recruitment, and thus were primed.

This dynamic – that education level, experience and priming correlate strongly with opinions and attitudes about end-of-life issues – runs throughout the study findings. One of the strongest positive findings from the focus group study is that patients and families who are better educated about the life-limiting nature of ESRD are more prepared to discuss and seek out the type of end-of-life care that they desire. Indeed, some apparent group differences might actually be a function of the preparedness of the participants. Specifically, the Hispanic participants in Denver were among the most savvy and progressive participants on many of the issues discussed. However, this seems to be more a function of education, experience, self-selection, and priming than of ethnicity.

Well, I’m comfortable with it because I know that’s what’s going to happen, you know… And I’ve dealt with it besides myself. I dealt with my brother’s passing away; I took care of him. And I took care of my father when he passed away. I took care of my mother when she passed away.
- Patient, CO


Limited Awareness about the Life-Limited Nature of ESRD

A lack of understanding, or at least acknowledgement, of the fact that ESRD is degenerative and will eventually lead to death seems to be widespread among ESRD patients. Many seem to assume they can be kept alive indefinitely on dialysis. This lack of understanding was particularly evident in Missouri and North Carolina.

The Colorado participants, on the other hand, seem much more aware of the seriousness of ESRD, and also aware that this is not common knowledge. They say that not everyone who should know does, in fact, know that renal failure will eventually lead to death and that dialysis is not a cure for ESRD. They stress the importance of informing patients and families about these basic facts. As one Colorado family member who is a nurse at a dialysis clinic explains: “I can’t tell you how many [new] patients come into our unit that think that their kidneys are going to start working again…[They think] that this is just a temporary thing.”

With kidney disease, it’s not something that’s going to go away. I mean, it’s going to progressively get worse. It doesn’t get better, it gets worse.
- Patient, CO

Many Unanswered Questions

Participants vary widely as to how informed they are about their illness. Some participants say they are, and do seem to be, quite well informed. Others admit they know very little about ESRD, dialysis, or the specifics of their own (or their loved one’s) condition and prognosis. A few cannot even name what kind of dialysis they are on, and are even unaware that there are different types.

Whatever their level of knowledge, most patients say they want to know more. Even those who are knowledgeable have many questions. Participants differ in terms of how aggressive they are about getting their questions answered. Some make a great effort to educate themselves and participate in medical decision-making. Others seem to just go along with whatever their doctors recommend. In discussions about how well-informed they feel about their disease, treatment and prognosis, it is clear that proactive patients and families get more information. Many participants also believe proactive, informed patients get better care.

We really liked [my mom’s doctor]. He kept us informed … [But] we just didn’t know anything about renal failure or glucose dialysis, nothing…We just didn’t know enough about what was going on with her.
- Family Member, MO

Healthcare Professionals are often Inaccessible

Participants say one reason they have so many unanswered questions is that healthcare professionals, and doctors in particular, are inaccessible, busy, and unapproachable. Most complain that doctors never have time to talk with them and address their concerns. There are exceptions of course; a number of participants talked about doctors who made themselves very available and some that are even proactive about talking with patients and family members.

Participants have mixed feelings about getting information and advice from providers other than doctors. Some have had very good experiences with nurses, social workers and technicians. Indeed, some say these providers are a better source than doctors since they are usually more accessible and sometimes more knowledgeable. Other patients are hesitant to go to other providers for help. Some have had negative experiences doing so or just do not have close enough relationships with any nurses or social workers to make them feel comfortable approaching them with questions. Others simply feel that doctors are the best source.

Alternative Resources are in Short Supply

Some participants have looked to outside resources for information about ESRD. Some have learned from other patients or support groups. Others collect and read all the pamphlets available at doctors’ offices and clinics. Some more educated participants have done their own research on the Web. In general, participants feel there are not enough resources for patients and families and that much of the existing information is too technical.

Mixed Ratings of Dialysis Clinics

Patients have mixed opinions about their dialysis clinics. In Missouri and Colorado, most participants are pleased with both the medical and personal care provided. Participants in North Carolina are less pleased. Some North Carolinians say the technicians and other staff lack compassion. Some feel the technicians are inadequately trained, and a few even question the quality of the care provided.

Patient and family members’ assessment of their dialysis clinic is important. If clinics are to engage and educate people on end-of-life issues, people must feel that clinic personnel are educated, competent, and compassionate.

Lack of Continuity of Care

Whatever their experience with their individual dialysis clinics, there seems to be a lack of connection between patients’ dialysis unit and their other healthcare providers. For many it seems the clinic is simply where they go for dialysis, and it is only tangentially connected to their other healthcare resources and providers.

Moreover, participants note that patients rarely die in the dialysis unit. Rather, they die at hospitals or nursing homes. This is important because it shows that participants, even if they appreciate the care they or their loved-ones have received in their dialysis clinic, do not necessarily see the clinic and its personnel playing a role in end-of-life care or planning.

My experience with getting support from dialysis staff has been more from nurses than it has from doctors. There’s some good RNs out there that can really answer a lot of questions, and are really knowledgeable. I’ve learned more from nurses, more than I ever learned from the doctor…
- Patient, CO

Talking and Planning around End-of-Life Issues

Starting Point: Tough Terminology

One of the challenges in exploring this issue is participants’ varied levels of familiarity with the terminology used. Many participants are unfamiliar with the term “advance directive” (see discussion below). There is also confusion around the term “end of life.” For example, some participants interpret “end-of-life planning” to mean making funeral arrangements and completing a will.

Stopping Dialysis

Participants have mixed opinions about whether and when it is acceptable to terminate dialysis (or other life-sustaining treatment). Many participants, and patients in particular, say they can imagine a point at which they would consider stopping. Both the Missouri and Colorado family member groups had participants whose loved-ones had discontinued dialysis. Beyond that, quite a few participants know of patients who had stopped. In general, people seem supportive of that decision, provided the person is very ill and elderly.

A few patients say they would not stop dialysis under any circumstances. Some feel a religious duty to continue, and believe stopping is tantamount to suicide. As a Missouri patient says, “I think religion has a lot to do with all of us staying on our dialysis. I really do. I think the man up there, he’s taking care of us.”

I think if I was real bad, I would [stop dialysis]. Like, if I was in the bed and I couldn’t do nothing for myself anymore. If I was completely dependent on my son or whoever. I think I would quit… because I wouldn’t want to live that way.
- Patient, CO

Talking about and Planning for the End of Life

Despite having dealt with a terminal condition for a long time, many participants have done very little thinking or talking about end-of-life issues. Some seem unable or unwilling to address the subject. A few worry that talking about death is defeatist or may be self-fulfilling; they prefer to focus on staying alive. Others point out that it is not they but their loved-ones who are unable to tackle the topic. As one Colorado patient explains, “[My siblings] don’t want to hear it, they are real distant….When I tell them, ‘Well this is what I want to happen if it comes,’ they are like, ‘Let’s talk about something else.’”

There are exceptions of course. Some participants, in Colorado especially, say they or their loved-one have done a great deal of talking with family members and healthcare providers about end-of-life issues. Some family members say their deceased loved-one had asked questions about what to expect during death and made their end-of-life wishes clear.

Focus group results suggest that some end-of-life issues are easier to talk about – and make decisions about – than others. Completing a will and making funeral arrangements seems easier for many participants than deciding whether they want a DNR or what end-of-life wishes would be in different circumstances. It seems easier to talk about concerns associated with when a person has died than when he or she is dying.

Often, end-of-life issues, if discussed at all, are only touched on indirectly. While many of the participants say their conversations about end-of-life issues have been limited, there is a sense of preparedness nevertheless. In the family groups, many caregivers – especially spouses – say they felt well prepared and knew their loved-one’s end-of-life wishes, despite relatively little discussion. As a Missouri widow explains, “Well, [we just knew] just through the different illnesses that we got we really [knew]. It was really never discussed but it’s just something that [we knew from] comments that would be made so those decisions were made a long, long time ago.”

I think that it was one thing for us to prepare all the material things and have the house in order and paperwork and everything done…. But to verbally discuss it was kind of like saying, “I’ve given up.” So you don’t. You don’t really stand around and say, “This is what’s going to happen.”
- Family Member, MO

Advance Directives: Limited Knowledge

While some have heard of advance directives, only a few participants are really familiar or comfortable with the term. Almost half had never heard the term prior to the focus group they attended. Even among participants who have an advance directive of some sort, few use that label.

After a brief discussion to gauge knowledge about advance directives, participants read the following definition before exploring the topic further.

Advance Directives

An advance directive is a document, such as a living will, that tells a patient’s healthcare providers what kind of care the patient would like to have if he or she became unable to make medical decisions. An advance directive describes the kind of treatment a person would want to receive for different levels of illness. For example, a directive would describe what kind of care the patient would want if they had a critical illness, a terminal illness or permanent unconsciousness.

A Do Not Resuscitate Order or DNR is one type of advance directive. A DNR is an order, signed by a doctor, which instructs other healthcare providers not to perform cardiopulmonary resuscitation (CPR) if a patient stops breathing.

I got that [thing that says] if I get so sick, don't hook me up to that machine to try to keep me alive… I'm talking about that report. I've got them all in the doctor's office where I go to so they won't hook me up to that machine…I done signed the papers.
- Patient, NC

Most Think Advance Directives Are Important…

Most participants agree having an advance directive is important. They recognize that it allows a person to make decisions about his or her life and death while they are still able to do so. Most agree that advance directives lessen the possibility that their loved-ones will have to make, and possibly fight over, difficult decisions. Participants who have had formative experience with the death of a loved-one are the most strongly in favor of advance directives. Several spoke of deaths in which the lack of an advance directive made an already difficult time more difficult. Others told how an advance directive had lessened the stress and sorrow of a loved-one’s passing.

…But “Have Not Gotten Around to It”

Although most participants agree that having an advance directive is a good idea, relatively few have one. Even in Colorado, where patients and family members were the most aware and forward thinking, only about half the patients and slightly fewer of the family members have an advance directive. Many of those who do not have one explain that, while they know it is important to fill one out, they “just haven’t gotten around to it” or “aren’t ready.”

[It’s about] making decisions about your life while you can still make that decision and not wait until it happens and then somebody in the court has to decide for you and your family.
- Patient, MO

Some Simply Do Not Want an Advance Directive

Some participants actively resist having an advance directive. Some say they feel that completing an advance directive would be premature; they are not “that ill.” Just as some fear that talking about their death will hasten it, others fear that filling out an advance directive may become a self-fulfilling prophecy. A few object to advance directives because they want all possible measures taken to keep them alive (few are aware that an advance directive can stipulate that all necessary means be taken to sustain life). Some do not want to put their wishes in writing for fear they may change. As one patient explains, “You may think you might want to be in the hospice. You may think you want to be home or whatever. But, when it comes to that time, still having the ability to say ‘No, this is what I want for the last few hours’ - is somebody going to honor those last wishes?”

For some participants, especially those in Missouri, the problem may in part stem from the way they first learned about advance directives. Some patients were only told about advance directives when presented with a form by a hospital admission clerk with little or no explanation. Even participants who had gotten advance directive forms from social workers seem to have received very little explanation about them.

The nurse talked to me about it one time, but I told her that I wasn’t ready to have one… because you never know, there’s miracles.
- Patient, CO

The Role Of Providers In End-Of-Life Planning

Many Do Not See a Role for Healthcare Providers…

Many participants feel dialysis clinics, as places one goes for life-sustaining treatment, are an inappropriate venue for discussions about death and dying. In the words of one Missouri patient, “If you came to the center and they said, ‘Now, we’re going to talk to you about dying,’ I think that would be a low blow.”

More generally, some participants are uncomfortable with the idea of any healthcare provider engaging patients and families around end-of-life issues; those with less experience and education are especially unlikely to see providers in this role. Some feel providers should focus on sustaining life, and that they cannot simultaneously make preparations for death. Some feel death and dying are outside the medical realm, either because these issues are intensely personal or spiritual or because they do not see what role providers would play or what knowledge they could share. Some patients are explicit in their rejection of provider involvement in end-of-life planning. Others had never thought about healthcare providers in this capacity; it simply would never cross their minds to discuss preparing for end of life with doctors, nurses or social workers.

He’s the doctor he’s supposed to keep us alive.
- Patient, CO

...But Some Participants Do Recognize the Benefits of Provider Involvement

Although some are reluctant to embrace this idea, the most sophisticated and experienced participants unquestionably see a role for providers in end-of-life planning. After some discussion, most concede that there is a role for healthcare providers – including dialysis clinic staff – in helping patients and families prepare for the end of life. In the words of a Colorado patient, “Yes [there is a role for healthcare providers], because we – I don’t think we all know all this. And I think if, when you first go in, they ask you these [kinds of questions] …Then you could make your own decisions on what you wanted …I mean, it doesn’t come into your mind, to have all this.”

But, you know, when they’ve tried everything under the sun, you know. They have to be – they have to lay it out for you.
- Patient, CO

Which Healthcare Providers Should Take on End-of-Life Issues?

Participants have mixed feelings about which healthcare providers should engage patients and families on these issues. Some feel if anyone is going to play this role, it should be the doctor. After all, he or she is the main caregiver and the most knowledgeable, trusted figure. Others feel better about talking with providers other than doctors, such as nurses and social workers, noting that they may take more time or discuss aspects that doctors would not cover.

Discussions about which healthcare providers should broach this topic offer a revealing example of how education and experience affect participants’ views. In Missouri and North Carolina, many participants express discomfort with the idea of discussing death with social workers. Some even question whether this is in a social worker’s job description. Participants in Colorado (who tended to be more educated) are more willing to see social workers in this role. They are aware that dialysis social workers are trained specifically to deal with these issues.

Mixed Experiences Discussing End-of-Life with Providers

Focus groups participants report mixed experiences in talking about end-of-life issues with healthcare providers. Many have had very positive experiences. They describe doctors, nurses and social workers that have helped them and their loved-ones tackle these issues. Those who were especially likely to report positive experiences working through end-of-life issues with healthcare providers included family members whose loved-one had chosen to end dialysis as well as participants from both groups with hospice experience.

Unfortunately, some participants report unsuccessful interactions with healthcare providers in this vein. In Colorado, several patients tell of experiences in which they had talked with a provider about stopping dialysis and the provider’s only response was to recommend anti-depressants. In some cases, these were fairly young, healthy patients, so perhaps the providers' reactions were appropriate – that is, ending dialysis might have been premature – but these patients were upset that their concerns were brushed off. At the very least, it seems the providers missed an opportunity to talk to patients about end-of-life issues.

Perhaps most important is that many participants have no experiences to report. Even among the family members of deceased ESRD patients, many say healthcare providers never approached them about end-of-life issues or did so only at the very end or their loved-one’s life. Likewise, many patients who have been on dialysis for years have never discussed these issues with any of their providers.

Why would we speak to [the social worker] about something like that? Because they don't know. They don't know no more about it than you do.
- Patient, NC

Tact and Timing are Critical to These Discussions

Participants differ in terms of their openness to talking with healthcare professionals about end-of-life care, and in their views about whether and to what extent dialysis clinics are the appropriate venue for this intervention. Even those who are most open feel that this topic must be approached carefully, at the right time, and with the clear understanding that the ultimate decisions rest with patients and their families. One Missouri patient’s comment demonstrates participants’ ambivalence about being approached on this topic and the care that should be taken: “I’d like to at least know that there was somebody here that you could go to, to do that when you wanted. You don’t have to shove it down people’s throat.”

Hospice Care, Palliative Care and Quality in Dying

Participants explored the concept of “quality in dying” in a number of ways. Family members talked about what went well with their loved-one’s death, and what they wish had been different. Patients were asked similar questions about the deaths of fellow patients. Next, participants in both groups discussed hospice care. They also read and discussed a description of palliative care (see below). Lastly, participants listed all the aspects of a dying experience they would use to measure quality, and then listed the five they feel are most important.

Hospice Care has Mostly Positive Connotations, Some Gaps in Knowledge

Almost all the participants have heard of hospice care, and most know at least a little about what it entails. Most have positive notions about the care patients and families receive in hospice. There are some gaps in their knowledge. Many think hospice care is only available to cancer patients and not an option for people with ESRD. A few believe hospice is only available in hospice facilities, not in patients’ homes. Some are uncomfortable even discussing hospice because it is seen as a last resort.

Palliative Care: Sounds Good, but Lacks Familiarity

Few participants had heard the term “palliative care.” When they read and discussed the following description, they had mostly positive reactions. Most feel that it describes the kind of care they would want for themselves and their loved-ones. Many equate palliative care with hospice care.

Palliative Care

Palliative care means care which focuses on easing pain and making life better for people who are dying and for their loved-ones. Palliative care means taking care of the whole person - not just their physical symptoms, but also their emotional and spiritual needs. It looks at death and dying as something natural and personal. The goal of palliative care is to keep dying people as pain-free and comfortable as possible, to help them maintain their dignity, and to provide them the best quality of life until the very end of life.

I never heard of [palliative care], and I worked in medical field. Well, I’m not a nurse but I mean, I worked at the health services center for 35 years and I never heard the word.
- Family Member, CO

Downsides and Misinterpretations of Palliative Care

In discussion about palliative care and hospice care, participants do voice some concerns. In general, those who are less comfortable with end-of-life issues are more restrained in their enthusiasm about palliative and hospice care. As one North Carolina patient puts it, “I don't know, to tell you the truth, I don't know of any ‘good death.’” Beyond this general uneasiness with the notion of a good death, participants have more specific concerns about palliative care.

Questions about Availability and Probability

Participants question the availability of this kind of care; they doubt that it is the norm. Many family members doubt their loved-one got this kind of care. As a daughter in Missouri complained, “I felt like she’s an old person and that’s exactly how they [were] treating her…If one of us kids were not there, I don’t think she was getting very good quality care and I don’t think they were concerned about pain.” Some participants stress that palliative care – and pain control in particular – should be a focus of care for all patients, not just those who are near death.

Some question whether this kind of care is even possible. As one North Carolina family member says, “You have no control over [death]…Yes, we want to make it as comfortable as we can. We don't want people to lose their dignity. We don't want people to do all of these things. But we do this when it is in our power to do this. There are some areas, maybe some cases, where it may not be in your power.”

I don't know, to tell you the truth. I don't know of any “good death.”
- Patient, NC
Does Palliative Care Mean Euthanasia?.

One North Carolina family member feared palliative care might be akin to euthanasia or even assisted suicide. This was only one individual, but if this definition of palliative care reminds this man of euthanasia, it might raise the same concern with others.

Too Much Ado

In Colorado, a few participants feel palliative care (and hospice care specifically) prolongs the dying process. For example, when asked if she would ever want hospice care, one Colorado patient replied, “I wouldn’t feel comfortable with it. Well, only because I feel it’s prolonging what’s going to take place anyway.”

Further conversation suggests patients’ misgivings have less to do with concerns about prolonging death than with feeling it is “too much ado.” In the words of one patient, “My personal feeling about it is: just let me go…. I think you’re only creating more pain for [your family] because the bottom line is you’re going to leave…. They make you as comfortable as possible and let you leave…this world in dignity, but I wouldn’t want it. I wouldn’t choose it for myself.” Another Colorado patient’s objection seemed to have more to do with involving outsiders: “If I’m going to go, I’d like my wife can take care of me. I wouldn’t like anybody else to come in or do anything for me.” These ambivalent feelings about hospice and palliative care seem more prevalent among men, though one woman in the Colorado patient group seemed to share the feeling.

Measuring Quality In Dying

The items listed in the description of palliative care – pain control, dignity, the meeting of emotional and spiritual needs, maintaining quality of life – resonate strongly with participants. In this final discussion and exercise, they added a few other aspects they feel are important to measuring quality in dying. The most important aspects, and participants’ feelings about them, are explored below.

It important to note that a number of the aspects participants deemed most important in this exercise were not raised earlier in the group discussions. This suggests that neither patients nor family members had thought much about some of those elements which, upon reflection, they consider vital.

They gave [my father] pain medication and everything before when he was on dialysis, but if he had some pain then, they weren’t nearly as concerned about it. Then, once he went into hospice care, that was their primary concern – to keep him pain free. And I think it would have been nice if they had started to worry about that a little more before he went into hospice care, you know, to help him be more pain free as much as possible.
-Family Member, CO

If I’m to go, I [just] want to go. I don’t want all that. I know they are not prolonging it. I know they are not feeding me all this stuff, but I’d rather not have all that, you know?
- Patient, CO

Controlling Pain and Being as Comfortable as Possible

Participants feel controlling pain is vital; many feel it is the single most important element of palliative care. Some even see it as a given that suffering is kept to a minimum, and thus they assume pain control is always a major concern of those who care for the dying. On the other hand, some participants, especially family members, feel doctors are not concerned enough about pain.

Along with pain control, another important concern is ‘not lingering.’ As a Missouri family member succinctly puts it: “A good death is just quick.” Participants also stress the importance of being treated with compassion by those around you – be they healthcare providers or family members.

For some participants, concerns about pain are complicated by worries about over-medication. They feel it can be difficult to balance the need for pain control with a desire to be mentally alert.

A couple hours of pain is no problem. But it’s the ongoing pain and misery that’s what I really don’t want, is sustained pain and misery. I don’t want that.
- Patient, MO

Spiritual Needs

Another major area of concern is spiritual preparedness. Interestingly, this element was seldom mentioned in group discussions but struck a nerve when mentioned as part of the palliative care definition. It is worth noting that some participants think spiritual matters are beyond the medical realm; thus they may not feel it is an appropriate concern for healthcare providers.

For some participants, especially those in the North Carolina group, being “right with God” is the most important – even the only – concern. Indeed, some seem to use this as a justification for not thinking about other aspects of the end of life. They feel that whatever happens is God’s will. As one such North Carolina patient explains, “I don't think the pain would bother me that much. When my time is up that is the way He meant for me to go.”

His main concern was his soul, spiritual. The only thing he told me is, you know, just don’t forget about me, make sure you have masses said, pray for me every night and all this kind of stuff, but he was ready...
- Family Member, CO

Where…and with Whom

Another major concern for patients is being where they want to be when they die. Most say they want to die at home; some say they would prefer to be in a nursing home or hospice facility in order to lighten the burden on their loved-ones. Quite a few had not given this much thought. One patient in Missouri mused that he might prefer not to die in his own bed. As he explained, “I haven’t really thought about it that much, but I’m not sure I’d really want to die in my own bed. I mean, that’s something for [my wife] to deal with every time she sleeps on it.”

Another important issue is with whom patients want to be at the end. Most say they want to be surrounded by family. A few say they prefer to be alone because they want to spare their loved-ones. As a Colorado family member explains, “I wouldn’t want to tell my pains to my wife or to my children. I want to hold them for myself. I want to suffer myself because I don’t [want] them to suffer.” Others would prefer to be alone simply because they prefer the solitude.

My dad always said that when he died he didn’t want to die in the hospital with strangers … or in an old age home, he wanted to die at home. So we saw to it that he did.
-Family Member, CO

Concern About Loved-Ones During Death and After

Participants worry about the effect their death will have on their loved-ones. Patients, in particular, do not want to be a burden on their families either financially or emotionally. Many stress that they want support available to help their families cope not just during their death, but also during the mourning period. On that note, some family members are angry that neither their loved-one’s doctor nor the dialysis clinic kept in touch after their loved-one’s death. As a Colorado family member laments, “I didn’t get anything from the doctors, the nurses, the social worker. Nobody ever called after he passed away. They were wonderful right before, you know, calling or answering the questions…but once he passed away, I never heard from a single person.”

Participants also want to ensure their loved-ones will be okay in the months and years following their death. They want to know that their children, especially, will be in good shape emotionally and financially. As one North Carolina family member explained in reference to her mother’s death, “I think knowing that your loved-one left behind is going to be well taken care of…[that] they are going to be okay…. For instance, my mom knew that my little sister was going to be well taken care of …She wasn't worried about that.”

Expressing Love and Saying Goodbye

Participants feel it is important to have a chance to say goodbye to their family and friends and to express their love. Bereaved family members who had the opportunity to have this kind of conversation with their loved-ones say these conversations were very important and speak of them with great reverence.

I’d want to be able to say goodbye to everyone and tell them how much they all meant, how much they all mean to me and that I appreciated being in, being in their family, being with them. I’d want to be with my family and say goodbye because when you don’t get to say goodbye to someone who has passed away, it’s hard. It’s harder to accept that death.
-Patient, CO

Being Prepared

Another major concern for both patients and family members is being prepared. Preparation means different things to different people. For some, being prepared means having funeral arrangements planned and paid for, or having made out their will. For only a few does being prepared mean having an advance directive.

Some participants talk about being prepared in a more emotional or psychological sense. They talk about knowing that death is imminent and being ready and “at peace.” Some also discuss being prepared in terms of knowing what to expect – that is, “what is going on and what is going to happen.” Participants who are concerned about this kind of preparedness say that straight-talk from healthcare providers, and doctors in particular, is vital.

One thing that helped me…was the doctor came to me towards the end and just kind of laid it on the line. [He said], ‘I don’t think he’s going to make it.’ I appreciated that… Some of them are kind of evasive they don’t want to just come right out and tell you what’s really going on.
- Family Member, MO

Wishes Honored

Another important factor for some participants is having their end-of-life wishes followed – whatever those wishes might be. Some stress that they would not want to be kept alive on a machine or “be a vegetable.” Some have more specific requests, such as who they would, or would not, want at their side during their last hours. As important as these wishes are to some participants, they do not always make the connection between having their wishes fulfilled and making those wishes known. Furthermore, many do not recognize the importance of not just communicating their wishes verbally, but actually putting them in writing.

It is worth noting that a few participants say they do not really care about this element. Basically, they feel that since they are going to be dead, or close to it, they would prefer to have their families decide what is best.

Maintaining Dignity

Participants stress the importance of helping patients maintain their dignity. In this vein, they stress the importance of allowing dying patients some measure of privacy. Some also say that patients should not be pitied or treated disrespectfully by those around them – be they family members or healthcare providers.

What if you don’t have a choice, if your kidneys did fail so bad that you go into a coma and you, and nobody knows about [your wishes]?…. What I’m saying [is] this way you have a chance. You have a choice to respond to something
- Patient, CO

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Promoting Excellence in End-of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit for more resources.

Promoting Excellence