A questioned the oft-held notion that most people prefer to die at home. Although public surveys commonly report that two-thirds of those asked say they prefer to die at home, "there is considerable variation between studies," wrote Kristian Pollock, of Nottingham University, in England. In addition, "A substantial number of people do not specify a preference, and there is rarely an option for 'it depends' or 'does not matter.'"
Furthermore, "Preferences for place of care are rarely clearly differentiated from place of death," Pollock continued. "When they are, preference for care at home is greater than for death at home."
The overall biggest concern is pain while dying; "However, some expect or find that pain is less well controlled at home," she noted.
Also, Pollock wrote, "The value and emotional importance of home as a safe and private space may be degraded by its annexation as a site of hospital outreach and the invasive influx of equipment and staff that dying at home requires. Patients and family members may have concerns about the witnessing of suffering and death and the contamination of place and memory that may be a legacy of death at home."
"Normalizing home as the best and natural place to die promotes a sense of guilt and failure if death occurs elsewhere," she concluded. "The cultural script about death and dying risks being rewritten to promote ostensive choice as de facto obligation. Given the projected increase in institutional deaths, the hospital needs to be reinvented as a viable alternative and place of excellent care for dying patients and their families."
乌鸦传媒 asked a group of experts via email for their thoughts on the issues addressed in the paper; their responses are below.
Is home always the best and preferred place of death?
"The answer to the question in the title of this paper: 'Is home always the best and preferred place of death?' is obviously No, in England, in the U.S., or anywhere," wrote , director of the ethics programs and the palliative care programs at Beth Israel Deaconess Medical Center, in Boston. "Even in the surveys that consistently report that the majority of patients surveyed say they would want to die at home, many patients say they do not want that."
And there is something else to consider, said , director of adult neuro-oncology, hospice, and palliative medicine at Montefiore Einstein Medical Center, in New York City. "It is clear that many families can and will provide home hospice care at a highly skilled level when given appropriate training, assistance and resources, and that some families find it an incredibly fulfilling and rewarding experience," he wrote.
However, "For others, the daunting task of caring for a loved one who is in distress while they themselves are grieving, may be too much to bear. Home hospice programs have made tremendous progress in this regard, but seldom provide 24-hour care for unpredictable and urgent symptoms and situations that can arise at any moment in the mortally ill."
What do people envision "dying at home" to mean?
The question is, "Do they think they will be in pain?" wrote , chief medical officer of Healthcare @ Home, the division of supportive care, and Geriatrics Allegheny Health Network, in Monroeville, Pa. "Pain can usually be managed using relatively simple methods that can easily be done at home.
"Do they think that good end-of-life care requires the technology commonly associated with hospitals (e.g. oxygen, monitoring equipment, etc. ... )? People are relieved to find out that this technology can either be provided at home or is not necessary for good care ... Do they worry they will be a burden to their family? Do they feel like dying at home might traumatize their loved ones? These are legitimate concerns."
What has been your personal experience? Do you ever see any who don't want to die at home?
"It never ceases to amaze me how differently individuals view death and the dying process," said , neuro-oncology section chief at Carolinas Medical Center, in Charlotte, N.C. "Some have never even considered their wishes. In addition to treating the medical issues, we must address the practical ones. Is there a caregiver? If so, can the caregiver physically and emotionally handle the needs of their loved one? Does the patient have family members or friends, and what are the dynamics surrounding their relationships?
"In many cases, I do recommend an inpatient facility. One reason for this is the harsh reality that insurance often does not pay for continuous care in the home. Families must attempt to pay caregivers out-of-pocket or assume the caretaker roles. Many individuals are ill-equipped or not capable of providing in-home, end-of-life care, including medication administration, lifting the patient, bathing, etc. With inpatient care, professionals can care for the ill patient and the loved ones can resume their natural roles."
, director of ambulatory palliative care at the University of Alabama at Birmingham, expressed a similar view. "Based on my own clinical experience, there are many patients who for cultural reasons or reasons related to inadequate support at home may not identify dying at home as preferable," she wrote. "Many of the current quality metrics applied to end-of-life care in the U.S. are measures of whether processes of care are taking place that lead to care plans that are optimally aligned with patient and family values and preferences for care."
Can pain control be managed as adequately at home as in the hospital?
"Pain can be managed as well at home as in hospital provided that there is access to a flying squad or rapid response team that can respond to changes of status," said , president of the Levine Cancer Institute, in Charlotte, N.C. "Such a team needs to be appropriately trained, legally empowered to make appropriate treatment decisions, covered medico-legally and via societal values, and operating via evidence based guidelines. It should be remembered that pain is only one aspect of palliative or end-of-life care."
, acting director of the Pain and Palliative Care Program at Fox Chase Cancer Center in Philadelphia, pointed out that "Not every patient, however, has access to such care, caregivers and the resources. Moreover, at times, pain itself may be difficult to control, even for experienced teams. In such situations, acute hospital care - with access to specialists, medications and professional care - may be more favorable than home. The final choice depends on the patient's and family preferences, the nature of the patient's pain and available resources."
What are important measures of quality of care at the end of life?
"Place of death has been used as a quality indicator for end-of-life care primarily in the U.K. health system, [while] 'Death at home' is not routinely tracked as a quality indicator in the United States," Kvale said. "The nature of quality indicators is that many of them are initially selected based on expert consensus. Optimally quality measures are subsequently tested to evaluate whether they actually lead to improved outcomes, which might be better patient experience, better symptom control, better caregiver experience, or more effective healthcare utilization."
What kind of research is needed in this area, and what research questions do we need to answer?
"Dying at home has already been designated by many developed countries as a 'quality of care' standard by which health systems will be measured, but this judgment (of patients, families, health care providers and institutions) has not been validated to truly improve quality," wrote Graber. "This 'one-size-fits-all approach' is not appropriate, and much more research is needed to try and predict which patients and families are likely to experience a 'good death' at home and how we can adequately educate and equip them to do so."
"What we need is research in how to better identify what patients, and families, can provide this level of care and give them the resources they need to do so," he wrote. "We also need better research in what patients and families cannot provide hospice care at home, and then institute measures to provide for inpatient hospice care that are cost effective and truly provide quality care for all patients and families."
What can be done to improve end-of-life care?
"The whole field of 'end-of-life care' desperately needs valid quality measures that assess whether each individual patient's priorities were understood and addressed, up through the end of life," wrote Forrow. "One proven way to do this is post-death surveys of family members asking them about their loved one's experience of care, starting with the general question, 'Would you say your loved one was always cared for the way s/he would have wanted?', and then asking specific questions about not just the location of care at the end of life, but whether symptoms were adequately controlled, whether needed emotional/family support was provided, etc."