First of two parts.

Each November, the hospice and palliative care professional community celebrates National Palliative Care Month. At first glance, highlighting the concept of death and dying may seem a bit dark, but it is actually the concept of quality of life and the importance placed on life that is truly celebrated.

It is true that palliative care serves patients and families who are experiencing serious or terminal illness. But as any palliative care professional – from nurse to social worker to volunteer to pastoral counselor – will attest, the focus is always on the value of life and the quality of life of each patient .

By placing the focus of palliative care on life rather than death, the patient and family can focus on:

• Maintain/develop personal relationships.
• Reasonable exercise programs.
• Continuation of religious and/or spiritual traditions.
• Quality time with friends and family members.
• Hobbies.
• Creation of photo albums, scrapbooks, diaries and legacies.

Remember, your palliative care team will make suggestions to improve your pain and symptoms, all with the ultimate goal of allowing you to live your life as fully and functionally as possible. Pain relief will improve activities, help with self-care will save energy for visiting family and friends, and allowing a volunteer into your home will give caregivers a time for well-deserved rest and relaxation.

Myths about palliative care

There are a number of myths around palliative care:

Myth 1: Palliative care is intended for patients in the last days of their life.

In fact, palliative care was designed to care for patients and their families during the last six months of their lives. The longer patients are cared for by palliative care professionals, the better their symptoms are controlled and the better their quality of life.

Myth 2: Painkillers are given in high doses to put the patient to sleep and hasten death.

Painkillers are used at the lowest doses needed to control pain and keep patients alert, always focusing on living life to the fullest. Medications are never given to hasten death, but only to control pain and maintain quality of life.

Myth 3: Once patients begin hospice services, death will soon occur.

The statistics on this question are interesting. In a major study of patients with congestive heart failure, those who received palliative care actually lived 29 days longer. Additionally, on average, 15% of patients leave palliative care services due to significant improvement in their symptoms.

Myth 4: Patients receiving palliative care services cannot leave their homes or travel.

The truth is that patients receiving palliative care can drive, travel as much as they can, go to bingo, the hairdresser or the casino – in fact, come and go as they can. The goal is to improve symptoms so that patients can live their lives to the fullest while coping with a serious illness.

Although the subject of death and dying is somewhat taboo in the United States, palliative care professionals rejoice in the life potential that their patients still possess. The focus is on the quality of relationships, maintaining a functional lifestyle, and living the life they are meant to live. Palliative care professionals also celebrate the many lives they have improved, all the lives they have touched, and the fact that they have been chosen to dedicate their professional lives to helping others live more fully.

To find out which hospices serve your community, call the NHPCO helpline at 1-800-658-8898 or visit www.caringinfo.org/findahospice.

Medical Contributor: Ralph DeMario, MD, former Marketing Director, Hospice of the Sacred Heart.

Paul J. Mackarey, PT, DHSc., is a Doctor of Health Sciences specializing in orthopedic and sports physical therapy. He is in private practice in Scranton and Clarks Summit and is an associate professor of clinical medicine at the Geisinger Commonwealth School of Medicine. Email: [email protected].