None of us wants to die. Indeed, the United States in particular is a death-denying culture. But what if you knew it was happening? What would constitute a “good death”? What kind of care would you want to receive? Past research has shown there are five important elements of high quality end-of-life care:

  • Desired level of physical comfort and emotional support
  • Shared medical decisions among patients, physicians, and family members
  • Respect
  • Information and emotional support for family members
  • Coordinated care across all healthcare settings

But, in a time when the healthcare industry is facing financial limitations, staff shortages, and increasing fragmentation, are the dying receiving the quality of care they deserve? To answer this question, a group of researchers set out to evaluate the US dying experience at home and in institutional settings. The results of their study were published in the January 7th issue of the Journal of the American Medical Association. The researchers found that many of the people dying in the US today are not receiving the symptom control, physician communication, emotional support, or respect they need.

About the study

The researchers conducted phone interviews with family members or other close associates of 1578 people who had died in the nine to fifteen months prior to the study. During the interview, each participant was asked about the location and quality of care their loved one received during the last 48 hours of their lives. These questions covered several important areas of concern:

  • Desired level of physical comfort and emotional support (Were your loved one’s needs met regarding pain, difficulty breathing, or emotional distress?)
  • Shared decision making (Was your loved one’s doctor accessible to you? To your loved one? Did you ever feel the doctor was not communicating with you enough?)
  • Appropriate level of respect (Was your loved one treated with respect by the staff? How consistently?)
  • Quality of care concerns (Were your family’s emotional needs attended to? Did you feel well informed? Was your loved one’s care well coordinated?)

The findings

Of the 1578 patients who died, 1059 (67.1%) died in some type of healthcare institution, such as a hospital or a nursing home. Of the 519 (32.9%) who died in their homes, 198 (38.2%) received no nursing services, 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services.

The researchers found that family perceptions of quality of care differed depending on their loved one’s care setting. For example, family members of individuals who died in a nursing home or at home with nursing services were more likely to be dissatisfied with the level of pain relief (31.8% and 42.6% respectively). This was true of only 18.3% of those whose family member died at home with hospice services. Half of the family members interviewed felt their loved one did not receive enough emotional support. Compared to other venues, however, home hospice care provided the best emotional support according to the participating families.

Family members of individuals dying in a nursing home setting expressed the greatest dissatisfaction with the amount of respect their loved one received (31.8%). The level of dissatisfaction was modestly lower in the hospital setting (20.4%) and at home with nursing services (15.5%), and better for those receiving hospice care at home (3.8%).

In the end, family members of patients receiving hospice services were the most satisfied with the quality of care their loved one received, with as many as 70.7% rating this care as “excellent”. This was true of less than 50% of those whose loved one died in an institutional setting or with home health services.

How does this affect you?

These results make it clear that there is an urgent need for improving end-of-life-care in the United States. Bereaved family members surveyed for this study expressed a high rate of dissatisfaction with the end-of-life-care their loved ones received.

One caveat to this assessment is hospice care, which was consistently viewed as superior to the other settings. Hospice care is a newcomer to the healthcare industry. In the 1960s, as medical science was discovering dramatic new ways to combat disease and save lives, the hospice movement in Europe and the US was looking at how to help people at the end of life. The mission of the hospice movement is to explore ways to improve the process of dying and shed light on the needs of dying patients. The hospice movement works to raise awareness of the importance of patients as individual, unique human beings with individual needs and rights deserving of respect.

In the end, the researchers call for a public health approach that uses sustained and multifaceted interventions to improve end-of-life care in the US. But, quality end-of-life-care is neither cheap nor easy. According to Last Acts, a national coalition of organizations working to educate physicians, patients, and families on how to improve care for the dying, quality end-of-life-care requires taking care of the whole person—body, mind, and spirit. Doing this may require a change in our collective view of death, away from a catastrophic event to be feared and towards a period of transition that is natural, peaceful, and dignified.