The committee solicited written testimony about care for individuals who are likely approaching death. In addition to testimony provided at the committee’s public meetings (see Appendix A), comments were received through an online survey1 (see Box C-1). The committee asked for thoughts, stories, and comments from individuals who have a serious and progressive illness or condition and their families, caregivers, and care providers, as well as others who are interested in end-of-life care. The committee was particularly interested in testimony about barriers to care, opportunities for improving care, patient and family experiences with care, and experiences of health care providers. The committee received 578 responses. These comments, along with the in-person testimony described in Appendix A, provided rich context for the committee’s work. This appendix provides highlights and a brief summary of the experiences and opinions of those who provided this testimony. Box C-1 provides an overview of the survey used to solicit this testimony.
Responses were received from a wide range of individuals. Caregivers who provided compelling testimony included husbands, wives, sisters, brothers, sons, daughters, nieces, godchildren, parents, cousins, in-laws, friends, and neighbors. The majority of those cared for were elderly, but
1Respondents were informed that the Institute of Medicine would not record identifying information such as individuals’ names, email addresses, or IP addresses. Only aggregated responses without personally identifying information were presented to the committee and placed in the public access file for this project. Respondents were also told that their responses might be referenced or quoted in this report.
BOX C-1 Survey Overview and Testimony Questions
The Institute of Medicine is undertaking a project that will examine care for individuals approaching death. The committee will assess the delivery of health care, social, and other supports to both the person approaching death and the family; person-family-provider communication of values, preferences, and beliefs; advance care planning; health care costs, financing, and reimbursement; and education of health professionals, patients, families, employers, and the public at large.
You may submit comments in any or all of the following areas.
Experiences Receiving Care
Question 1: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. Your stories may include how you have talked with health care providers, your family, and friends; how you have discussed and reviewed your spiritual or religious needs, your finances, or any other issues. Your stories may also include what you liked and did not like about communication with your providers and others who gave you support, treatment approaches, or any other aspects of care.
Question 2: If you are a family member or friend of an individual who has died, what care or supports did you need and/or receive while your family member or friend was in the advanced stages of their condition. What care or supports did you need and/or receive after they died? What care or support did you NOT receive and wish you had received during the illness, at the time of death, or afterwards.
many were in midlife, and some were adolescents and young adults. Some individuals who were themselves living with serious illness and/or likely approaching death also provided their own perspectives. The illnesses and conditions described included Alzheimer’s disease, various types of cancer, heart failure, dementia, kidney failure, liver failure, Parkinson’s disease, AIDS, and bone fractures.
An array of health care professionals also provided compelling testimony. Many wrote about their experiences both as professionals and as caregivers for loved ones. Testimony was received from ethicists, social workers, chaplains, priests, pastors, and health care administrators, as well as dieticians, oncologists, nephrologists, nurses, cardiologists, neurologists, pediatricians, psychologists, and intensive care unit (ICU) physicians. Many
Experiences Providing Care
Question 3: If you are a health care professional, please tell us about your experiences in providing care to individuals with a serious progressive illness or condition and their families. What are the problems, opportunities, challenges, and successes you encounter? Does the term “end of life” impact the willingness of the individuals you work with to engage in the provision of care or the willingness to receive it? Please indicate what type of professional you are (discipline/specialty).
Barriers to Care
Question 4: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?
Question 5: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?
Question 6: If you have additional thoughts about improving research, care, and education for or about individuals with a serious illness or medical condition who are likely approaching death, or if you would like to share information related to the committee’s work, please use the space provided below to do so. You may also email documents or articles to support your testimony to firstname.lastname@example.org.
of these professionals experienced similar challenges and frustrations, in their roles as both caregivers and health care professionals.
PERCEPTIONS OF DEATH
Many respondents, including caregivers and health care professionals, commented on the ways in which the topic of death is perceived by some health professions and among some patients and families. The perceptions were predominantly ones of fear. One caregiver commented, “Americans don’t see death as a part of life.” Another added that we are “too afraid to talk about death.” Health care professionals also commented about such fears among some of the patients and families they cared for but also among
their colleagues. One said, “Physicians are not comfortable discussing EOL [end-of-life] choices.”
Health care providers and nonproviders alike commented on the barrier presented by the “healing culture” of medicine and the belief by providers that death means failure. Said a critical care physician, “One of the biggest challenges I face in taking care of patients with advanced progressive illness is the unwillingness of some (not all, probably not even many) to face death and accept it as a part of life just like birth, marriage, etc. We are plagued by a complete lack of understanding and acceptance that we are going to die—our entire medical system is oriented to staving off death. As a clinician, I often feel a failure when someone dies under my care, even though in retrospect (and in the now) the course was laid out long ago by the disease process. Opportunities lie in educating the populace as a whole about death and its inevitability.”
Respondents also commented on perceptions of death within American culture. For example, one person remarked, “people in our culture are terrified of death and dying. It has been institutionalized and privatized to the point people are terrified of one of the few experiences we all have in common.” A provider, a chaplain, commented on the reasons for these perceptions by saying that “the politicization of discussion of end-of-life care (death panels associating the discussion of end-of-life choice with euthanasia) has definitely had an impact on public perception of these issues.” Caregivers and providers alike noted that a fear of death and dying is reflected in legal and legislative systems. Said a caregiver who cared for a dying spouse, “The matter of choice in the time and place of dying is a personal one, and the political and legal system should have NOTHING to say in the matter.” A palliative care nurse practitioner noted, “Politicians are afraid to discuss end of life care for fear of hearing the words ‘rationing’ or ‘death panels.’” An emergency medicine physician, who is currently caring for a family member, stated, “I think many physicians fear being sued because the most advanced treatment is not implemented.”
“Like most Americans I never thought of death or end-of-life issues until I was forced to. I had no idea how unprepared I was emotionally, mentally, financially, and spiritually to face my grandmother and mother’s terminal illnesses,” wrote another caregiver.
Importance of Conversation
An important theme that emerged from the testimony was the importance of clear and honest communication between providers and patients and their families. Many stories relayed the impact of not having sufficient
information, not understanding choices, and not feeling heard. For example, one caregiver said, “But, perhaps medical professionals could try to explain earlier and more clearly what is really going on. It’s dizzying, confusing, and emotionally difficult to navigate the medical establishment and to almost literally translate what they are telling patients and families.” One respondent with a serious illness described his/her perception that providers were not willing to talk about what will happen. Another wrote, “I have not seen lack of willingness to provide great end of life care, but rather the failure to point out that the end of life is approaching.” Another important issue raised by one caregiver was the problem of ageism and stereotyping of the elderly and its effect on care, including the “tendency of medical providers to talk with loved ones rather than respecting the patient and keeping the patient at the center of the conversation.”
However, there were also stories that relayed the impact of positive communication. A caregiver wrote: “When my dad passed just a few years ago, I was most grateful for medical personnel who took the time to listen sympathetically to my anxieties, fears, and questions. My most troubling question was, ‘Am I doing enough? Am I doing the right thing?’ They kindly offered options for care and counseled me as to what seemed reasonable, given his deteriorating condition.”
Many health care providers of all types acknowledged that there is fear and reluctance to provide honest and clear information, and that professionals need to talk more openly about options near the end of life. A provider noted, “Most patients and families are not afraid of having an honest discussion about serious illnesses or ‘end of life’ if it’s done well and professionally.”
There were several comments by providers about the terminology used by providers when talking with patients and families. Some believed that the term “end of life” should not be used. One person stated that it was not compatible with the medical profession’s philosophy of saving lives. Another commented that the term was important to use because it is unambiguous and helps patients and families hear the truth. Other providers suggested that terms such as “serious illness” and “end-stage illness” were more appropriate to use.
With regard to suggestions for improving communication, one caregiver simply stated, “Ask patients what they want.” Many others, including patients themselves, indicated that just having conversations was important. Said one caregiver, “What I appreciate most is honesty, accurate information, and empathy from health care providers.”
Advance Care Planning and Advance Directives
Another facet of communication reflected in the testimony was the use and honoring of advance directives. Some caregivers relayed stories of how care preferences were not assessed, and advance directives were not honored. Said one: “My mother has multiple sclerosis and is receiving excellent care from one of the top medical centers for MS [multiple sclerosis] in the nation. Despite the level of medical treatment, not one person has ever discussed her goals for treatment, her values and preferences, or what she would want doctors to do if something happened to her and she couldn’t communicate.” Another caregiver described the following situation: “My aunt had a DNR [do not resuscitate] on file when she was in the skilled nursing facility following a fall and fractured hip. She was moved to a new room the day after she got there and that evening was dying of aspiration. They tried to resuscitate her for ONE HOUR before giving up and thankfully, she was released from this torture and died. She was 90 years old. The reason they did this was that they had failed to move her DNR from one room to another, and yet, they somehow managed to move her azalea plant that I brought to her that day to her new room. Words cannot express how heartbreaking and infuriating this is to me.”
Other caregivers submitted comments expressing frustration about the inability to have conversations about advance directives. A caregiver stated, “Not sure how to get doctors to talk about advance directives, i.e., MOLST [Medical Orders for Life-Sustaining Treatment]. My dad’s doctor signed it—no discussion, etc., and told me (I’m a nurse) to go over the information and fill it out with my dad.”
Some caregivers commented that people need not only to have directives, but also the cooperation of family and providers. Many stories revealed the emotional impact that resulted when family members and physicians disagreed with the stated wishes of a patient. Among those living with serious illness, comments on this topic conveyed the importance of having advance directives, and it was suggested that digital advance directives be made standard practice to help ensure that they will be known and honored.
PROVISION OF CARE: DELIVERY, QUALITY, COORDINATION, AND TIMING
Individuals living with serious illness, caregivers, providers, and others wrote many compelling stories about how care was received and provided. Testimony revealed challenges with the coordination and continuity of care and with receiving the care individuals wanted (including limited interventions) when they wanted it.
One issue raised frequently by caregivers was a feeling that too many procedures and unnecessary surgeries occurred in the care of their loved one. A wife wrote, “When my late husband was battling a brain tumor in the last months of his life, the doctors wanted him to undergo another surgery. We knew enough to ask: what will this add to my quality of life and life span? The answer was: ‘well, the surgery, as you know is difficult, but it can add a few weeks to your life.’” Another caregiver commented that more treatment may be too much for some, but helpful to others: “I have seen many patients get chemotherapy treatment long after they have lost their quality of life and think that a little honesty may have given them more quality in the time they had left. I have also seen many patients live a high quality of life while receiving chemotherapy, which I think should be a determining factor when deciding treatment options.” A person living with a serious and chronic condition commented: “I have made it clear that I will be fighting until the end. I have said so through my advance directive.”
Other concerns expressed by caregivers included the fragmentation of care and lack of care coordination. These problems were also reported by providers. One provider, a primary care internist, said, “Tear down the barriers between acute hospital, home, nursing home, assisted living, hospice. Transitions among these are not easy, and any one doctor has a great deal of trouble navigating and coordinating them all.” Another person said regarding the care of his/her father: “The doctors that I have encountered in his care don’t want to talk about palliative care, advance directives, and any kind of general plan of care for him. Each specialist works in a silo, rather than a collaboration of care. We will bring tests results with us, so that one physician is aware of what others are doing.”
Another major concern expressed by respondents related to the adequacy of pain relief in individuals with serious illness. A provider believed that there was too much fear of addiction to pain medication, which prevents adequate pain control in patients. Still another provider reported that there was fear of hastening death by providing adequate pain relief.
Many caregivers relayed wonderfully positive experiences with hospice and palliative care, which benefited both the patient and family. One husband wrote: “The most important help we got was from hospice. They provided pain control, help for me as a care giver, unstinting nursing care for my wife, and the option of palliative sedation if she needed it. After she died they provided the grief support I so desperately needed.” Other caregivers noted that while their experience with hospice was good overall, there were challenges, such as the level and timeliness of assistance and assistance provided when a regular nurse is off duty, as well as obtaining adequate pain control. Once caregiver wrote: “My mother died 3 years ago in the aftermath of a heart attack. She fortunately received hospice care in an excellent hospital setting. The disturbing thing about her last hours was
that the hospital nurses would not administer enough pain medication to moderate her suffering. The hospice nurses checked in on her only once a day—we had been assured that she would be kept ‘completely comfortable’ but that was not the case, since the hospital staff insisted they did not want to medicate her to a level of unresponsiveness.” There were additional comments about hospice being a misunderstood service. For example, one provider said: “One of the biggest barriers to care regarding hospice services is the misunderstanding of patients that if you sign up for hospice you are giving up on living. The misconstrued notion that everyone has given up hope if you sign up for hospice. This could not be further from the truth.” While there were reports from providers that palliative care has become increasingly medicalized and less holistic, many providers and caregivers expressed that it was a very helpful service, one that was not offered soon enough.
Other topics mentioned as barriers to care included difficulty finding care for those with behavioral issues, the use of technology that makes the end of life more difficult to determine, and a lack of training about disability culture and lifestyle. In addition, policies and procedures were mentioned as preventing patient-centered care. One patient remarked, “Policies and procedures take center stage and the patient is a ‘bit player’ in the drama that unfolds.” There were also numerous comments that expressed support for or opposition to physician aid in dying.
A wide range of respondents offered suggestions for reducing barriers to good care. Providers called for increased coordination of care, more patient-centered care, earlier access to hospice (including an extension of the benefit to a 1-year prognosis rather than 6 months) and palliative care, and better access to home care.
Like providers, caregivers suggested that better coordination of care should be provided, even mandated, and that hospice should be offered early. Other suggestions from caregivers and those living with serious illness related to social supports and assistance in coping, such as the need for skilled advocates, social workers, better grief support, respite care, home visits, and pain control. Some stories relayed the extent of depression in loved ones who were dying and some who died by suicide. Some caregivers stated that more attention should be paid to the mental and cognitive health of people during the course of their illness. In addition, a multitude of stories spoke to the benefit and necessity of spiritual care. One person, the adult child of a dying man, wrote that the chaplain was able to explore some of his/her father’s questions that he did not want to discuss with his children. Another respondent commented, “I needed a chaplain’s care, and did not receive it, while she was dying, and afterwards. I get support from the congregation of which I am a part, but that is different, more diffuse care. I wanted to be able to talk about my friend, the courageous decision
she made, the quality of her dying, and how my world changed with her death.”
NEED FOR EDUCATION
Many of the topics raised in the sections above led to suggestions for education—for patients, family, providers, and the public at large. Testimony included ideas for ways to help change perceptions of death. A number of respondents suggested that public education initiatives are needed, such as television commercials to help normalize discussions of death and dying. One respondent recommended that providers work with producers in Hollywood to paint a more realistic picture of illness, codes, and other events surrounding the end of life.
To help patients and families, the use of technology was encouraged. One provider suggested that “improving the availability of communication with a cell phone, texting system that insures 24-hour care would be a great improvement. Access to videos online to discuss some of the issues related to terminal care, medications used by families to comfort patients, discussions to have with the patient to comfort and encourage, and a host of other needed information topics would be very helpful.” Other providers thought that patients and families should receive more education on the benefits of hospice and palliative care. Interestingly, many caregivers (and some providers) made the same recommendation for providers.
Additional suggestions were made regarding education for providers. These suggestions included formal curriculum requirements on or exposure to end-of-life care, humanities requirements for medical students, and training in effective communication. Training was also recommended for direct care workers and religious leaders.
COST OF CARE AND REIMBURSEMENT POLICIES
The cost of care was a serious concern expressed by caregivers. One commented, “Individuals with long term illness should not impoverish their families through medical costs. We need SERIOUS change to funding.” Another caregiver remarked that “the emotional cost is great, the financial cost is astronomical.”
Providers expressed frustration that the fee-for service model poses a problem for providing care for the ill and those near the end of life, that Medicare regulations drive care, and that there are financial incentives to treat patients aggressively. One provider commented, “I wish doctors were given more support to be there.” A nurse wrote, after reflecting on the death of a loved one, “We must look at restructure of reimbursement, so provid-
ers have incentives to spend the time that is needed, rather than getting paid fee for services and losing sight of what is most important.”
Health care professionals recommended many changes in reimbursement policies. Providers suggested payment for communication about treatment choices and goals of care, increased coverage for palliative care and hospice, and funding for coordination of care and other ancillary services (such as nursing time to address symptoms, health care navigators). Some providers also thought that compensation should be provided for transitional care. One palliative care nurse wrote about the need for “financial incentives that focus on quality of life, symptom management and caregiver burdens.” Caregivers noted that they experienced challenges when dealing with insurance companies. One respondent stated, “The challenges come with insurance companies and what they think is necessary or not necessary. The insurance companies may take their time to respond to our requests and frequently need more documentation. Their rules may change and what was acceptable 1 month may need clarification for the prescription to be filled by the pharmacy.” Caregivers also called for an easier process for filing claims and reimbursement for home health palliative care, and supported payment for discussions with providers about goals of care.
STRESS ON CAREGIVERS
Caregivers expressed a range of additional concerns that reflect issues related to stress on caregivers and other barriers to care. There were numerous reflections on the emotional and logistical difficulties faced by caregivers. One noted, “Caregivers are the backbone of care for this population. We are unpaid and under tremendous emotional distress.” Another commented, “Health care providers ought to take the time to consider the spouse or caregiver of a disabled or elderly person who is brought to them for treatment. Sometimes, the ‘bringer’ may be the person who needs the most care.” One caregiver mentioned the difficulties posed by sibling ineligibility for the Family and Medical Leave Act. In describing caring for a sick spouse, one respondent wrote, “There are days when it’s hard for me not to laugh when well-meaning people advise me to take care of myself. . . . My husband’s illness is my illness. I belong to a caregivers group, which is supportive. People who are not caregivers do not understand the continuous burden of the role and seem to think it can be walked away from or put aside forever or for a while. Not so. The stress feels as if I’m constantly holding my breath.”
Respondents also reported difficulties related to transportation and hospital parking. One provider wrote, “Issues my patients have, who is going to do the food shopping, how is my spouse going to cope, how does my spouse get a respite from caring for me.” Many caregivers described
the amount and types and difficulty of care they were required to offer. A chaplain who is also a caregiver for a spouse wrote about his/her experience: “The biggest shock for me has been how much our current system requires the patient in this situation to have a relative looking out for them. Some people are alone.” Another caregiver, reflecting on caring for his/her father during the end of his life, wrote, “His disease progressed rapidly and we were struggling with his daily care. We did hire a nurse for the last days of our father’s life as my sister and I felt unable to carry out some of the medical procedures that we felt required more skill than we were able to handle (catheterization). I am astounded that it would be expected of any caregiver, especially an elderly spouse.” Describing the burden seen on families caring for loved ones, one provider wrote, “The idea that families are often forced to make great personal and financial sacrifices to do what is best for their loved one is inexcusable for a country such as ours.”
While many caregivers and loved ones remarked that they received support during their grief and bereavement from health care providers, hospice companies, loved ones, and faith communities, others noted that these services and supports were inadequate or nonexistent. Reflecting on the passing of her mother-in-law, one respondent wrote, “Following her death, other than mailed pamphlets we received no bereavement care. My husband and sister-in-law, in particular, could have used this after losing both parents in less than 2 years.” While most providers and caregivers told of their experiences caring for adult parents, siblings, family members, and friends, some described the experience of caring for or losing a child. One respondent wrote, “I was transported to the emergency department during a miscarriage, and once the team determined that my life was not in danger from the blood loss, I was dismissed. There was no screening or assessment or offer of support—no recognition that this ‘loss’ was potentially traumatic—no moment of compassionate connection for what to me was the loss of a child.”
Another respondent talked about the passing of a parent: “Afterwards, I was so tired and often felt others did not appreciate the grief I experienced. Grief is a real issue that ultimately everyone if [they live] long enough, will pass through.”
The committee is grateful to the hundreds of individuals who shared their experiences and perspectives on care for individuals with serious illness and for those who are likely approaching death. Their responses shed light on the challenges faced and on supports that helped ease burdens. The following reflection from a caregiver perhaps summarizes some of the important messages from the many submissions received: “The success is that
for the most part, when you take the time to find out what’s most important to patients and families, they make very reasonable choices. The challenge is that our health care system does not encourage these conversations, our professional providers frequently do not have the time or training, and treatment measures default to those that are not patient-centered.”