Printer-friendly format

Peter Barton, in his book Not Fade Away; A Short Life Well Lived, which describes his own confrontation with mortality in the form of his incurable cancer, states “acceptance doesn’t mean the same thing as giving up.”

Palliative care is the acceptance that a disease such as diabetes, chronic lung disease or cancer is no longer curable and is definitely life limiting. However, palliative care does not give up on the treatment of the symptoms those diseases may cause. Whether the symptoms are physical, psychological, social or spiritual, palliative care’s goal is to improve not only the patient’s quality of life but also the quality of life of those caring for the patient.

In hospitals, where patients in intensive care units have multiple specialists, each focused on the organ system specialized in, palliative care teams have been and are being developed to coordinate care of the whole patient and manage the symptoms caused by disease. These symptoms can include physical problems such as pain from a diabetic neuropathy; psychological problems that may result in unhappiness from a long hospital stay; social problems often related to loss of income or loss of a job; and spiritual problems commonly dealing with guilt and what happens after death.

Palliative care, which at times is referred to as ‘care with compassion,’ includes not only the patient but the patient’s family. Family, in this setting, is not just the traditional family but includes those who matter most to the patient and those who the patient matters most to. Commonly, for convenience sake, the patient and family are referred to with the rather cold, technical sounding term “unit of care.”

Even though the patient may be in critical condition, the patient may have never discussed his wishes for the end of life with his family. Only about one-tenth of Americans have signed advanced health care directives. The palliative care team has expertise in guiding the ‘unit of care’ to an understanding of what the patient now desires or would desire if he could make his wishes known.

The palliative care team is interdisciplinary and usually includes, but is not limited to a physician, nurse, social worker, chaplain and pharmacist. With an order from the patient’s physician, and depending on the need of the patient, any of the team members can make the initial contact with the patient or family.
The Center to Advance Palliative Care (www.capc.org) has developed educational materials and protocols to guide the team through the evaluation. Many hospitals have used these guides while some have developed their own programs to fit with their specific goals.

Studies done through CAPC have shown that palliative care teams not only improve the quality of life of the patient, but also shorten the length of their stay in intensive care units and limit the need for readmissions of patients. With improved communication facilitated by the team, the families are more satisfied with the outcomes and are better able to deal with the issues created by a life limiting illness.

When a patient is to be discharged from the hospital, the palliative care team may assist with discharge planning to help assure that the patient goes to the most optimal setting considering all aspect of the current situation including caregiver issues and the needs of the family. If it appears that the patient’s life expectancy is measured in months not years, hospice services can be obtained. Hospice care is palliative care with a specific limited life expectancy. Because hospice care is a prescribed benefit of Medicare and Medicaid, it has guidelines and criteria which are set out by these agencies and must be followed. Hospice care can be provided in the home, assisted living facility, nursing home or hospital. Currently, many hospices are developing their own palliative care programs.

As noted on the website medicaring.org/whitepaper/, “It is possible to live comfortably, even with serious chronic illness. But, living with such illness requires planning for the ongoing course…”

Palliative care affirms life and provides a frame work for optimal symptom management across the spectrum of diseases.


Dr. Lucy W. Ertenberg is chief medical officer for Cornerstone Hospice



September 2007

Tags:

None

Login and voice your opinion!