A Hospice Text for Everyone

National Hospice Month is acknowledged and celebrated every November by hospitals, nursing homes, adult living facilities, administrators, doctors, nurses, nurses’ aides and of course hospice providers and programs. Like Social Workers’ Month and Long Term Care Week, it spotlights a population of clinicians and caregivers who otherwise perform extraordinary jobs without fanfare.

At VITAS Innovative Hospice Care® programs in Miami-Dade, Broward and West Palm Beach this month, you’ll find posters on the walls and buttons extolling the efforts of hospice caregivers proudly worn by team members: “Patients and Families Come First.”

But what we also do at VITAS, every day of the year, is advance the body of knowledge on hospice. Who is hospice-appropriate? How do you manage pain, or measure quality, or care for skin ulcers, when caring for the terminally ill? What are the ethical considerations in artificial hydration and nutrition? Why are some clinicians so ill-prepared to deal with death?

For the past 25 years VITAS has been asking and answering those questions and many more in our continuing effort to “Do Our Best Today and Do Even Better Tomorrow.” Finally, in 2002, we put it all down on paper and literally “wrote the book” on hospice. 20 Common Problems in End-of-Life Care is a 450-page book in 20 chapters that walks the clinician through the perceived complexities of providing patients and families with quality end-of-life care. Nineteen respected and authoritative VITAS professionals—from physicians and nurses to social workers and chaplains—contributed their expertise to produce this text. It is appropriate for any physician, regardless of level of training or specialty, who sees end-of-life care issues in her or his daily practice.

I knew this book needed to be written. I knew it because of the questions I have fielded in my 21 years in hospice care as a team physician, South Florida medical director, national medical director and chief medical officer. I knew it based on the disconnect between theory and practice that I have seen and heard in audiences as I speak about hospice and palliative care all over the country. However, what most convinced me to write the book on hospice was a passage in Harrison’s Principles of Internal Medicine, arguably the bible of internal medicine:

No problem is more distressing than that presented by the patient with an incurable disease, particularly when premature death is inevitable. . . . The physician also must be prepared to deal with guilt feelings on the part of the family when a member becomes gravely or hopelessly ill.

When the major text of internal medicine says I am supposed to be distressed when I am confronted with a patient with a terminal illness, how am I supposed to help the patient deal with his or her distress? When the terminally ill are equated with the hopelessly ill, how can I give hope to my patients at the end of life—when I’ve already been taught that they are hopeless?

The goal in writing 20 Common Problems was to diminish or even erase the distress physicians feel when faced with a patient’s terminal illness, so that physicians are better equipped to help those patients and their families at the end of life. With my associates and co-editors, Dr. Neal Weinreb and Dr. Joel Policzer, I attempted to make the book a “who, what, where” of care at the end of life: to teach physicians to recognize when a patient needs end-of-life care, to work with the patient and the hospice team, to know they’ve made a good decision and to understand the care being given.

End-of-life care is unlike anything else taught in medical school. In fact, it is still not taught in most medical schools. But when a physician understands it, even feels a part of the hospice team, the result is a realization that it is not “doing everything” that makes the difference at the end of life. It is the simple and methodical application of sound hospice practices and extraordinary human kindness administered day by day, one on one, without fanfare. And that is what we celebrate, every day at VITAS and every November in the rest of the world.

To request a copy of 20 Common Problems in End-of-Life Care, call (561) 364-1479 in West Palm Beach, (954) 486-4085 in Broward or (954) 437-5433 in Miami-Dade.