Hospice?

Anyone facing a terminal illness, or who is caring for someone afflicted by a terminal illness, needs to know about hospice. Hospice focuses on emotional and spiritual needs in addition to medical needs. It can be provided at either at a patient’s home or at an inpatient facility. Hospice offers palliative care which relieves the symptoms of a disease or disorder but is not designed to cure that disease.

One of the most important questions is: When does a person need hospice care? The answer is a surprising ‘as early as possible’. Many programs are available once a doctor qualifies a life expectancy of less than six months. However a person may (and can!) live beyond that time limit and can have their qualifications re-evaluated by a doctor. Anyone can refer a person to hospice care. According to WebMD, you may want to consider hospice care if: you have a disease or illness that is expected to shorten your life span; treatments that cure the disease or prolong life are more of a burden than a benefit; you want to spend your remaining life as comfortably as possible in a setting you choose (like your own home); you want family and friends to participate in your care; or you want any of these things for a loved one suffering from a terminal illness.

Hospice care may be more than you expect. It will put a patient in touch with specialists in many areas. A hospice team may include (but not be limited to) a physician, nurse, pharmacist, social worker, bereavement counselor, pastoral care, non-traditional therapies, and holistic medicine. The purpose is focusing on the person, not the illness, and making sure all physical, spiritual, and emotional needs of the patient are met. Pain management is an important part of hospice addressing issues before they become severe.

The Health-E Illinois (http://medlineplus.gov/illinois) Go Local database has many links to both hospice programs and the associated specialists. I encourage you to use the database, make phone calls and find a program that fits your needs. If you are looking for a program in another state, go to the main Go Local page.

Doctors don’t always know exactly how to treat terminal patients. Knowledge is growing and medical students are now routinely taught about the issues involved in end of life care. Below are links to more information and a brief bibliography with more information on hospice care. Some are designed for doctors and others are geared towards the general public. All books are available at the Health Sciences Library, or check with your own public library to get more information. In hospice care the important thing is not how you die, but how you live your life.

By Sam Meyer

Internet Resources:

MedlinePlus Hospice Care

NIH Senior Health

DHHS Hospice Center

Book Resources:

A Clinician’s Guide to Palliative Care edited by George Taylor, 2003. Designed for use by doctors in medical school, residency, or private practice, this book offers an introduction to the multidisciplinary field of palliative care.

A Physician’s Guide to Coping with Death and Dying by Jan Swanson, 2005. This book offers insights to medical professionals about both the dying process and effective communication with patients and families. It also addresses stress and burnout that affects doctors.

A Time for Listening and Caring: Spirituality and the Care of the Chronically Ill and Dying by Christina M. Puchalski. “In the practice of healing, a kind heart is as valuable as medical training, because it is the source of happiness for both oneself and others.”

Choices in Palliative Care: Issues in Health Care Delivery edited by Arthur Blank, 2007. The average person lives with chronic disease for three to six years; nine out of ten deaths in America are caused by chronic illness; half of all care of HIV/AIDS patients is defined as palliative care. This book highlights current ideas in the field.

Death in the Clinic edited by Lynn Jansen, 2006. A collection of essays about current issues in end of life care such as doctor assisted suicide, voluntary euthanasia, and medical ethics. “Most people die in hospitals, yet the meaning and implications of death in the clinic are rarely explored … goes a long way towards filling the gap.”

Final Victory: Taking Charge of the Last Stages of Life, Facing Death on Your Own Terms by Thomas A Preston, 2000. According to the author, death does not have to be traumatic and painful to both patients and their families.

Hospice or Hemlock?: Searching for Heroic Compassion by Constance E. Putnam, 2002. Introduces readers to the background of the hospice and right to die (Hemlock) movements.

Living Beyond Limits: New Hope and Help for Facing Life Threatening Illness by David Spiegel, 1993. This book is based on the results from a study by the author published in the Lancet, which demonstrated that women with breast cancer who received social and emotional support, in addition to medical care, had less anxiety, depression, and pain. In addition these women were able to life up to twice as long as the women who received standard care. This book outlines how people with terminal illness can live fuller and possibly longer lives.

Medical Care at the End of Life: a Catholic Perspective by David E Kelly, 2006. Attention in this book is given to recent developments in the field such as the 2004 allocution by Pope John Paul II concerning nutrition and hydration as well as the Schiavo case in Florida.

Palliative Medicine: A Case Based Manual edited by Neil MacDonald, 2005. Second Edition. Combines the personal experience of physicians with advice from colleagues in addressing palliative medicine for medical students and physicians.

To Do No Harm: Learning to Care for the Seriously Ill by Alan C. Merman, 1999. Written by a chaplain/professor/doctor, this book is a study of how people experience serious illness, their suffering and how to understand them. “This book is a better way of learning what we need to know to heal ourselves and others, and when we can’t heal to at least do no harm.”