A Different Kind of Health Care
Surveys show that we want to die at home, free of pain, surrounded by the people we love. But the vast majority of us die in the hospital, alone, and experiencing unnecessary pain and other discomforts. While health professionals and medical technology now allow terminal patients to live longer, for many that means living with pain. Improvements in treatment of pain and other symptoms and a growing understanding of the role of palliative care, or “comfort care,” is changing that. A rising chorus of patients, their families, and health care professionals say the time has come to change how we die in America.
While conventional medical treatment focuses on finding a cure, palliative care focuses on maintaining quality of life. Studies from the World Health Organization show that: 4.5 million patients from developing and industrialized countries die each year in uncontrolled pain and other discomforts.
Palliative care seeks to address this concern as well as the social, spiritual and emotional burdens of patients. This newsletter features much more information about this new approach to care at the end of life.
What is Palliative Care?
Palliative care is the comprehensive management of a patient’s physical, psychological, social, spiritual and existential needs. It can be part of the treatment of any person with a serious or life-threatening medical condition for which a patient-centered approach, pain and symptom control, family involvement and compassionate care are needed. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and the family. Palliative care neither hastens nor postpones death, but rather seeks to relieve suffering and provide comfort, control symptoms and restore functional capacity while remaining sensitive to personal, cultural and religious values, beliefs and practices.
Palliative care is distinguished among clinical specialties in acknowledging that dying is a normal part of the life of every individual and every family. Because the family’s experience of terminal illness does not end at the moment of death, palliative care extends support to the family in their grief.
The Healthcare System Has Embrace Palliative Care
Because the medical profession has focused for so long on prolonging life, the transition to helping patients adjust to their end of life has not been a rapid one; however, the medical community is working to address this problem. A 1997 report published by the Institute of Medicine entitled Approaching Death, identified serious deficiencies in palliative care in the United States and called for the need to improve care of patients at the end of life. The study released seven recommendations, among them that medical training programs educate practitioners in the care of dying patients.
In 1998, a review of the 50 top-selling medical textbooks from a variety of specialties found that 24.1% of textbooks contained some mention of direction on end-of-life care, 19.1% provided minimal coverage of end-of-life care and 56.9% provided no direction in end-of-life care. While no specialization exists in palliative care, medical students can participate in curricular electives that incorporate didactic and experiential learning in end-of-life care.
A 1998 American Hospital Association survey found that 15% of 719 responding hospitals have an organized end-of-life service providing care and/or consultative services to dying patients and their families and 27% have a hospital-wide, formalized program that includes staff education for the management of acute and chronic pain.
To help encourage the practice of palliative care, The Robert Wood Johnson Foundation has created The Center to Advance Palliative Care (CAPC) as a resource to hospitals and health systems interested in developing palliative care programs. The Center to Advance Palliative Care will help assist hospitals with the planning, development and implementation of hospital and health-system based palliative care programs and will also promote palliative care educational opportunities for physicians, nurses and hospital executives. Additionally, CAPC will encourage the development of new mechanisms for financing palliative care services. Shortly, you will be able to find information about The Center to Advance Palliative Care online at: http://www.capcmssm.org/ The site is currently under construction but please make sure to stop by in a few months and see all they have to offer!
Where is Palliative Care Practiced?
The practice of easing pain and discomfort – physical, emotional, social, and spiritual – and making life better for the dying and their loved ones has been in practice for years within hospices across the country. Actually, hospice care and palliative care share the same core values and philosophies – both seek neither to prolong life nor to hasten death, but to enhance the quality of remaining life. Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their terminal illness. To better serve individuals with advanced or terminal illness and their families, many hospice programs encourage access to care earlier in the illness or disease process. Health care professionals who specialize in hospice and palliative care work closely with staff and volunteers to address all of the symptoms of illness, with the aim of promoting comfort and dignity.
Considered to be the model for quality, compassionate care at the end of life, hospice care involves a team-oriented approach of expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s wishes. Emotional and spiritual support also is extended to the family and loved ones. Hospice care is grounded on the philosophy of enabling patients to carry on a pain-free, alert life, and to manage other symptoms so that their last phase of life may be spent with dignity and quality. The focus is on caring, not curing. In most cases, the patient and family can stay together in the comfort of their home, but hospice care is also provided in freestanding hospice facilities, hospitals, and nursing homes and other long term care facilities.
Most often, the basic premise of hospice care is that a family member or responsible caregiver provides the primary care to the terminally ill individual, while members of the hospice staff make regular visits. Hospice staff includes physicians, nurses, home health aides, social workers, trained volunteers, clergy and other counselors. Members of the hospice staff are on-call 24 hours a day, seven days a week to give support and care when needed. Medicare, private health insurance, and Medicaid in 43 states cover hospice care for patients who meet certain criteria – usually, patients must be terminally ill with a prognosis of 6 months or less and must have ceased receiving curative treatment. However, this is not the case with all hospices.
The National Hospice and Palliative Care Organization (NHPCO), one of our Outreach Associates, represents hospice and palliative care programs and professionals throughout the United States. NHPCO is committed to improving end-of-life care and expanding access to hospice care so that they may profoundly enhance the quality of life for people who are dying and their loved ones. NHPCO is an excellent resource for information on hospice care in this country. Please visit them online at: NHPCO (http://www.nhpco.org/templates/1/homepage.cfm)
You can also learn about hospice care by visiting the web sites of these other On Our Own Terms Outreach Associates:
http://www.hospicefoundation.org
http://www.hospice-america.org
How Can I Learn About Palliative Care?
Perhaps you had never heard of palliative care before today or before you became involved in this outreach effort. Or, maybe you had heard the term palliative care, but didn’t know what it meant. There are many excellent resources for learning about palliative care, and one of the most comprehensive sources is Last Acts.
Last Acts, one of our Outreach Associates, is a national campaign to improve end-of-life care and communicate the many issues surrounding palliative care. Last Acts is comprised of 496 state , local and national Partners. It is broken down into six Task Forces and five ResourceCommittees that address specific areas of end of life; for instance, the Last Acts’ Palliative Care Task Force focuses on education about palliative care. This Task Force created the Precepts of Palliative Care which provide common ground for the discussion of palliative care for healthcare professionals. The Palliative Care Task Force, in collaboration with Last Acts’ Family Task Force, created the lay version of the precepts – the vision of better care at the end of life. These Precepts have been endorsed by 123 organizations. Read the Precepts of Palliative Care online at: PRECEPTS
And, log on to the Last Acts web site to learn more about this tremendous coalition and all they have to offer. Last Acts also provides an extensive listing of other palliative care web sites. You can locate Last Acts on the web at: http://www.lastacts.org/
Some other helpful sites for information on palliative care for consumers are:
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Bill Moyers
