The health community is getting the message and has realized that defining a “good death” requires input from patients and loved ones. The patient is looking for comfort, respect, emotional support, information and well-coordinated care. And to no one’s surprise, loved ones are looking for the same things. (3)

What is today’s deathbed reality? It is that nearly 7 out of 10 of us – some 69% – die in institutional settings – nursing homes or hospitals. 3 in 10, or 31%, die at home. Of those that die at home, 36% die without any caregiver present. 12% have the benefit of some nursing care, and 52% are supported by hospice services. (4)

The hospice movement was begun in 1946 with St. Christopher’s Hospice in England. (5) It championed a holistic approach to the care of terminally ill patients, primarily those with cancer. Over the years, the approach has been extended to a wide variety of patients with terminal illnesses, and has spread around the globe. In the United States, however, access to insurance coverage for hospice services for terminally ill seniors who do not have cancer remains problematic. It requires certification from a physician and the hospice medical director that the patient only has six months to live. Predicting this for chronic disease can be less reliable than for cancer. There is no penalty for underestimating life expectancy, but after 6 months, the patient must be recertiied every 60 days. (6,7)

The various sites in which people die are associated with different understandings of disease states, different financial circumstances, and different capacities to support the extensive needs of dying patients. They are also associated with different patient groups. For instance, elderly women who are not married are disproportionately represented among nursing home deaths. (4) But is that a problem? After all, what better place to die than in an institution with trained personnel, intravenous medications, and lots of technology?

A recent study surveying loved ones of patients who died indicates that it may be worth the effort to carefully plan where you wish to die. The satisfaction of loved ones with the care of dying family members or friends varies widely by site and staffing. Managing the symptoms of pain and shortness of breath is problematic for a patient dying at home with only some nursing help, but improves if hospice services are in place. Nursing homes are weaker in these areas, while hospitals do well at managing pain, and are the best at managing shortness of breath. (4)

In terms of emotional support and respect for the patient, hospice care is clearly the leader. For example, the study showed that in the judgment of surviving loved ones, only 35% of hospice patients lacked adequate emotional support, while 52% of hospital patients felt neglected. And while only 4% of hospice patients felt respect for them was wanting, 20% of hospital patients experienced disrespect. (4)

The study also reveals differences in how the patients’ loved ones were treated. Hospice once again markedly outperformed all others. Dissatisfaction with the level of family contact with physicians was only 14% in hospice compared to 31% in nursing homes and 51% in hospitals. Inadequate emotional support for families and loved ones was 21% in hospice compared to 36% in nursing homes and 38% in hospitals. And faulty information support for loved ones was a problem in 29% of hospice cases, compared to 44% in nursing homes and 50% in hospitals. (4)

Overall, looking at the needs of dying patients and the needs of their families and loved ones, it’s not just site but staff that counts. Less-than-excellent care was noted 29% of the time with hospice care, compared to 58% of the time with nursing homes and 53% with hospitals. But it’s not just being at home that makes the difference, because patients dying at home with just some nursing services experienced less-than-excellent care just as frequently as those in hospitals. (4)

Careful planning can make a “good death” a more likely outcome for patients and loved ones. In some cases, an institutional setting is the only appropriate choice, as with a patient in extreme pain or respiratory distress. But in general, hospitals and nursing homes appear poorly equipped, with the conflicting demands of acute and chronic care, staffing and budget limitations, and the complexity of operations, to manage the complex and personalized needs of a dying patient and her loved ones to a harmonious conclusion.

Hospice care is not perfect. For example it could improve care of shortness of breath, and emotional support for patients. But the idea of holistic care comes closer to achieving the ideal of a “good death” than any of the current options. We should build on that ideal of what is necessary for a “good death” – home based, multifaceted care, sustained, and information-rich for both patients and loved ones.

References:

1..Donelan K et al. Challenged to care: Informal caregivers in a changing health system. Health Affairs. 2002;21:222-231

2. .Magee M, D’Antonio M. The Best Medicine. New York, NY; Saint Martin’s Press; 1999.

3. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet.1998;351(suppl2):S1121-A1129.

4. Teno JM et al. Family perspectives on end-of-life care at the last place of care. JAMA. 2004;291:88-93

5. Saunders C. Care of patients suffering from terminal disease at St. Joseph’s Hospice, Hackney, London. Nursing Mirror. 1964;vii-x

6. Fox E et al. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. JAMA. 1999;282:1638-1648

7. California Hospice Association. Hospice Eligibility.