In the 1960s Roadrunner cartoons, Wily Coyote always bounced back from his fatal attempts to outsmart and snare the little feathered critter. On a weekly basis he survived bombings, cliff-falls, rocket backpack malfunctions, self-immolations and sundry schemes gone awry. But the roadrunner was indestructible, immortal and presumably, forever hungry for quick snacks. Faux-death was a mere springboard for the following Saturday adventure.
It’s surely over the top to make a case for a cartoon series embedding the American psyche with whispers of immortality, but in our culture “forever young” is the byword and quest of the generation, if not a universal drive. A Google search for “anti-aging” will receive over 10 million hits! And while the multi-billion dollar anti-aging market—botox, plastic surgery, etc.—flourishes we discover that the subject of death and dying is about as comfortable as bungee jumping over a snake-pit. “Doctors and hospitals” take care of those things, and besides, “it’s not going to happen to me, at least anytime soon.” The subject is hidden behind a curtain of denial.
Advances in modern medicine in the first half of the 20th century institutionalized end of life care. Until the mid-1960s terminal patients had little choice or control over their final days, and hospitals and nursing homes were the standard physician-guided trajectory for the critically ill until the hospice movement questioned and altered the old paradigm. In 1969 the eminent Swiss physician Elizabeth Kubler-Ross published the seminal On Death and Dying after a long struggle to gain credibility from the medical establishment. (Physicians thought she was a morbid, perverse freak.) The taboos and silence surrounding the issue were finally challenged and the “extend life at all costs” approach inherent in modern medical treatment questioned.
During the first senatorial hearings on death with dignity, Kübler-Ross, stated, “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”
The stage was set for palliative care in a home environment and the hospice model of care was introduced to the U.S. by Dame Cicely Saunders, a British physician who studied the use of opiates to manage pain in dying patients, and created St. Christopher’s Hospice in London. Practical, patient-centered end of life care was beginning to be accepted; the first American hospice was opened in New Haven in 1974. Saunders listed the core principles formulated from her research with cancer patients as:
- Death must be accepted.
- The patient’s total care must be managed by a skilled interdisiplanary team whose members communicate regularly with one another.
- The common symptoms of terminal disease, especially the palliation of pain in all its aspects needs to be effectively controlled.
- The patient and family as a single unit of care must be recognized.
- An active home-care program should be implemented.
- An active program of bereavement care for the family after the death of the patient must be provided.
- Research and education should be ongoing.
Despite a widening acceptance, hospice still suffers from significant misperceptions and attitudes hobbling its integration into the mainstream medical continuum. Many people view hospice as the darkness at the end of the tunnel, a kind of parking place for one’s last few days. That perception couldn’t be farther from the truth. Hospice is a concept, flexible in its application and styled according to each hospice group. Hospice teams, many of them volunteers, work hand in hand with the patient’s family, offering a host of services, many of which the public is unaware.
- Nursing services
- Physician services
- Medical social services—a social worker can provide advice and counseling to the patient and family members
- Home health aide and homemaker services
- Spiritual support; grief, bereavement and other counseling
- Physical, occupational, and speech/language therapy
- Trained volunteers
- Medicine for controlling pain and other symptoms
- Medical supplies and appliances
- Continuous care at home during periods of crisis
- Short-term inpatient care
Chester River Home Care and Hospice provides these services for Kent and Queen Anne’s counties. Recently celebrating their 25th anniversary, the service continues its mission to “support and encourage to help each patient reach maximum independence.”
Part of the Chester River Health System and University of Maryland Medical System, the Home Care and Hospice provide services wherever the patient lives: house, apartment, nursing home or the Hospice Suite at Chester River Manor.
But how does it work? Who is eligible? What’s the difference between Home Care and Hospice, and how much are the fees?
These are questions we will answer in part 2, interviewing Cindy Bach, Director, and Renee Baker, Clinical Supervisor and Hospice Coordinator. Part 3 will be an interview with a hospice volunteer. Most of all, we will explore a main theme in hospice care: it’s not about dying; it’s about autonomy, dignity and the quality of one’s life.
Beth says
Hospice is a wonderful thing! I agree completely. It is about dignity and quality of one’s life. Looking forward to reading the next article!
MDW says
Congratulations on this article. Hospice information should be readily available to patients and families , and not just at the last minute.
Pam says
Excellent article and information. I cannot say enough positive things about hospice care. My family had hospice for my mother and their care of my mother and our family was outstanding. I agree with MDW that hospice information should be available to patients and their families sooner than later.