Chronic, incurable diseases are characterized by three distinct periods. In the first, or stable period, the patient experiences few pathological symptoms. Life span is measured in months to years as with dementia (e.g. Alzheimer’s disease) or motor neuron disease (e.g. Parkinson’s disease). The second, or symptomatic period, is characterized by a worsening of the underlying disease associated with frequent symptoms and a survival of months to weeks. The final or terminal period is the dying phase during which survival is measured in weeks to days and the control of symptoms is more difficult. Within this context, care given in the symptomatic and terminal period is palliative in nature. Simply put, palliative care deals with those patients whose disease is not responsive to curative treatments.

Palliative care spans a wide range of chronic incurable diseases that are symptomatic and life-ending, such as advanced cancer, degenerative motor neuron disease, late stage Alzheimer’s disease, end-stage pulmonary and cardiac diseases, terminal AIDS cases, etc. The quality of care given includes emotional guidance, spiritual care, palliative medicine, family counseling and other necessary levels of attention to enhance the quality of life of the individual.

Researchers have identified a number of barriers that have stood in the way of providing the optimal level of care that patients in the terminal phase may need as well as identifying concomitant needs of the family and the treating physician. These include:

• Insufficient analgesic: patients suffer from lack of appropriate pain management.
• Physicians, being human, are uncomfortable with subject of death, as are their patients and patient’s family.
• Sense of future: death of patient may seem like a personal failure. Dying is part of life. There is a need to come to terms with the inevitability of death.
• Lack of communication: family overwhelmed and confused and is asked to make end-of-life decisions about medical care about which they know very little i.e. artificial hydration and tube feeding.

Palliative care centers try to deal with the above barriers. Entry into these centers is based on a patient's life expectancy. Most centers take in patients who have 6 months or less to live. The ideal center involves the whole family in the care of the patient. Individual and group and family counseling session are held. Family groups may continue after the patient has died, so that the grieving process may be handled in a more effective manner. Medical personnel need to share information with family and patient and deal with their feelings about death and their own self-esteem.

Hospital centers may have to provide similar care in their settings as our population ages and only the more seriously sick individual will be able to get into these settings.

Everyone in our society wants a "good death" (read quick and not painful). We need to continuously look at the models of providing individuals this goal and provide the means to implement such models for each citizen. Suicide, while an answer, is not the only answer to a "good death".

Lastly, let us hope that our competent researchers will come up with answers to these incurable diseases that would make this discussion moot. Seemingly, the potential for this goal lies in the Human Genome Project.

(For further information see: Lynne & Harrold. Handbook for mortals: Guidance for people facing serious illness. New York: Oxford University Press 1999. Discusses how to help a patient have a "good" death.)

Please see:

Hospice Care Benefits-Part I-What Medicare Will or Will Not Cover
Update on Hospice Care-Part III

FOR AN INFORMATIVE AND PERSONAL ARTICLE ON PRACTICAL SUGGESTIONS WHEN SELECTING A NURSING HOME SEE OUR ARTICLE "How to Select a Nursing Home"

Harold Rubin, MS, ABD, CRC, Guest Lecturer
April 30, 2000

http://www.therubins.com

To e-mail: hrubin!2@nyc.rr.com or rubin@brainlink.com

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