When you learn to die, you learn to live. That is the compelling theme of the well-known book, Tuesdays with Morrie. Learning to die is a personal process; no one else can do it for us. It is possible, however, that caring for another during his or her end of life pilgrimage may help with our own process of learning.

One day while touring a new senior housing complex, a local minister commented that the people he used to visit in nursing homes are now being cared for at home. His casual observations are pretty accurate. Nursing home professionals would not only agree, but they would also relate that their frail residents are living longer with chronic illnesses and require more care and caring than in years past.

Can nursing homes really provide the needed care and caring? Nursing home admissions for extended stays are declining. People are finding ways to stay at home. They desperately wish to preserve personal dignity. They also fear a loss of control, poor care and perhaps a painful death. Various state initiatives provide care services so people may successfully stay home and ‘age in place.’

When people encounter the end of life, we typically do not hear about fears relating to care and caring when hospice is helping the family. Hospice programs generally receive great accolades for their work. Hospice extends to some nursing homes so eligible residents can receive the program benefits. In an ideal world, one would think that hospice in a nursing home shouldn’t be necessary; a nursing home should always be a premier residence for a ‘good death.’

Why do some nursing homes have arrangements with hospice programs and others don’t? One possible reason is financial. Government programs such as Medicare and Medicaid pay a daily rate for hospice. When hospice provides a nursing home resident with end of life care, the nursing home becomes a partner with hospice. They share the daily payment and therefore receive less money than when they individually provide all of the care. Now more than ever, because of changes in government reimbursement and increasing insurance costs, nursing homes are struggling to survive.

Therefore, we must take an active role in assuring appropriate end of life care. There are several national efforts that are helping; two are especially relevant at this time. In 1999, a national foundation, the Milbank Memorial Fund, published an important document, Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine. As caregivers and as mortal human beings, it is reassuring to know that 14 major societies, including the American Medical Association and the Joint Commission on Accreditation of Health Care Organizations (JCAHO), have created policy that incorporate these principles. The principles for professional practice include:

  • Respect for the dignity of both patients and caregivers
  • Sensitivity to and respect for the patient’s and family’s wishes
  • Use of appropriate measures consistent with patient choices
  • Alleviation of pain and other physical symptoms
  • Assessment and management of psychological, social and spiritual/religious problems
  • Offering continuity. The patient should be able to continue to be cared for by his/her primary care and specialist providers
  • Providing access to any therapy, which may realistically be expected to improve the patient’s quality of life, including alternative or non-traditional treatments
  • Providing access to palliative care and hospice care
  • Respecting the patient’s right to refuse treatment
  • Respecting the physician’s professional responsibility to discontinue some treatments, when appropriate, with consideration for both patient and family preferences
  • Promote clinical and evidence-based research on providing care at the end of life

Your physician and/or the physician treating your loved one may not yet be familiar with these principles. Often doctors learn new information from patients and caregivers. There is no time like the present to share this information.

Another initiative is a major four part public television series from Bill Moyers, On Our Own Terms: Moyers on Dying in America. The first hour-long segment airs September 10. Accompanying the series is a national outreach effort to educate the public about end of life care. Improving care and caring during the final life passage is an aspect of this life event that society can impact.

Connie Ford Siskowski