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October 22, 2004

Palliative Care by George Hankins-Hull


Discussion: Sometime ago a New England newspaper, the Worcester Telegram & Gazette, carried a story entitled "Various Pathways Lead to a Good Death." in which a retired former chief of surgery, Dr. H. Brownell, spoke of his concern that too many patients die what he called 'a bad death.' In the article Brownell spoke about seeing patients, including his own, die in an intensive care unit with tubes poked into their chests, their bellies and just about every orifice of their bodies. He further commented about patients resuscitated with so much fluid that their faces were unrecognizable, arms black and blue from needles and blood sticks, in severe pain and unable to communicateand with very little hope of survival. "No one," he commented, "should have to die like this." Janet L. Abrahm, M.D., F.A.C.P., at the University of Pennsylvania School of Medicine, Philadelphia, encourages physicians to broaden their concept of care for patients who are terminally ill. Dr. Abrahm comments, "when one of our patients has an incurable illness, we physicians must expand our focus of care beyond the disease to encompass all dimensions of the patient's distress. That is when we begin to deliver palliative care."

What is palliative care?

Palliative care is a specialized form of health care that meets the physical, emotional and spiritual needs of both an individual facing a life-threatening illness and his or her loved ones. With palliative care treating physical, emotional and spiritual suffering is as essential as treating the underlying disease regardless of whether the disease is curable or not.

When the physical, emotional and spiritual needs of a terminally ill person are met, the journey towards death can become an enriching experience that gives meaning and completeness to life. By helping people make choices about their treatment, what services they need and where they want to be cared for, they are given dignity at a time when they need it most.

Family members and friends can also find this an intense and difficult time, which may leave lasting psychological scars. Palliative care provides support and help needed to not only cope with changes in their loved one but also grow in love and friendship with them. Bereavement support is a part of palliative care as the transition from death of a loved one to life without them can be very difficult.

When does a person need palliative care?

Palliative care can be helpful at any stage of a life-threatening or chronic illness. In the old view of medical care the palliative care team became active when a doctor told the patient that they could no longer be cured. Today, palliative care therapy works side by side with curative therapy.

What are the goals of palliative care?

Palliative care involves a team of health care professionals who can help terminally and chronically ill people to live the rest of their lives with dignity and healing. The first goal of palliative care is to provide as much physical comfort as possible. It is impossible to enjoy the company of family and friends if one is experiencing severe pain, nausea or shortness of breath.

Palliative care also seeks to help address life issues such as family conflict, anxiety concerning the progression of the disease, and an individual's values and meaning regarding living and dying. The aim of palliative care is to make an individual physically comfortable so that one can think beyond the physical to emotional and spiritual health.

Philosophy of palliative care World Health Organization Taken from Cancer Pain Relief and Palliative Care

Affirms the right of the individual and family to participate in informed discussions and make treatment choices.

Affirms life and regards dying as a normal process.

Neither hastens nor postpones death.

Provides relief from pain and other distressing symptoms.

Integrates psychological and spiritual aspects of care.

Provides a support system to help a person live as actively as possible until death.

Provides a support system to help the family and loved ones cope during the person's illness and/or bereavement.

Palliative care in general:

1. Palliative care strives to keep patients comfortable when cure is not possible.

2. Palliative care deals with the physical, emotional and spiritual needs of patients and their families.

3. Palliative care views death as a natural part of life.

World Health Organization definition of palliative care:

Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anticancer treatment. Radiotherapy, chemotherapy and surgery have a place in palliative care provided that the symptomatic benefits of treatment clearly outweigh the disadvantages. Investigative procedures are kept to a minimum.
Why is palliative care necessary?

Western society does not want to talk or think about death. Our medical technology has removed dying and death from our homes where it used to be a part of life. Death now occurs mostly in the hospital where it can be ignored and minimized. However, during the past thirty years the palliative care and hospice movement has gained strength. It is a movement to rediscover the lost meaning of the healthcare professional as a person who cares for another person the whole person, not just their disease.

Unfortunately, palliative care in the hospital or home is often not available to those who need it. It is estimated that 70% of people who experience prolonged and severe pain do so without adequate treatment. Symptoms such as anxiety, depression, shortness of breath and fatigue are sometimes overlooked or ignored by healthcare professionals. The greatest fear for those facing the end of their life is being alone. Also, caregivers of people with chronic or life-threatening illnesses often feel alone in their struggle to provide good care. Palliative care strives to deal with the many issues surrounding people who face life-threatening illnesses.

Staffing-The Team Approach:

Palliative care is best managed by a team of healthcare professionals and volunteers who are committed to a cooperative interdisciplinary approach to patient care. Members of the following disciplines may staff the palliative care team:

Physician: The physician is in charge of the medical care of the patient especially in controlling physical symptoms. The physician may discuss all sorts of symptoms with the patient including emotional, financial and spiritual problems. The doctor may then refer to other members of the care team to help in these areas.

Nursing: Nurses who are specially trained in palliative care are an excellent resource for medication and alternative treatments of physical symptoms. The nurse may be involved in planning the care of the patient at home and coordinating the necessary home services.

Pharmacist: The pharmacist would provide patient and family education concerning the medications being used by the patient. The pharmacist can prove a valuable resource for both the physician and the nurse when they are seeking treatments for difficult-to-manage-symptoms.

Social Worker: The social worker is trained in helping people with emotional, social and financial problems and is extremely helpful to the patient as well as family members. The social worker is involved with any financial issues related to treatment and or discharge home.

Care Manager:
The care managers' role in palliative care is to assure that appropriate coordination of resources takes place. This coordination could include medical care, access to community resources & benefits, as well as reinforcement of the family care structure. Inpatient and Community Care Managers would work together and with the rest of the palliative care team to assure that the patients needs are being met.

Dietitian: Eating is an activity shared by all and deeply rooted in our culture. Food serves a multitude of purposes in our lives apart from nutrition. It can function as comfort, a friend or as a means to express love as in caring for another. Dietitians can offer suggestions and support to patients and family members on symptoms interfering with the pleasure of eating, on dignity of the person or on optimizing quality of life around eating.

Chaplain: Many patients find the chaplain helpful as they review the life they've lived and as they begin to finish the business of living. The chaplain is also a resource to the patient's family and staff dealing with the related ethical, social and emotional issues as they arise in end of life care.

Rehabilitation Therapists: The physiotherapists and occupational therapist are helpful in pain and symptom management with non-medical approach to therapy. They can be very helpful in recommending adaptations to the home, should the person wish to die at home.

Pain Management: The control of pain is an essential element of palliative care and patients are reassured when they understand that pain control is a high priority of care at the end of life.

Alternative Therapies: Alternative therapies such as aromatherapy, music therapy and massage, to name but a few, are important non-medical treatment options to help patients control pain, anxiety and generally improve the quality of life experienced by the patient.

Volunteers: Volunteers spend time with the patient and family providing supportive listening as well as helping tasks that they are unable to do due to their illness.
George Hankins-Hull Spiritual Care Coordinator LRGHealthcare

Posted by Perry Miller, Editor at October 22, 2004 9:36 AM

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