First Do Not Abandon
It is exciting to be a part of this rapidly growing field. I owe much to parents, mentors, patients, and family. Perhaps the most formative influences have been my false starts, missteps, and failures.
Solving The World's Problems
As an undergraduate in the early 1970s, it seemed clear to me that all the problems of the world were really about resource allocation and overpopulation. I set out to develop a contraceptive that we could put in the water supply, and an antidote that could be administered to aspiring parents. Internal medicine at Stanford Medical School looked impossible and so I opted for obstetrics and gynecology, and matched in my first choice of academic programs in 1978. The demands and working conditions were such that a third of the interns (including me) left obstetrics and gynecology on the University Hospital rotation. They convinced me that I was not cut out to be a surgeon.
In 1979, I felt lucky to land a National Institutes of Health (NIH)-sponsored research fellowship in a population center. Here, after months of hard work I discovered:
1. It is hard to grow cells, but easy to grow bacteria in culture dishes.
2. Laboratory animals do not appreciate what you have to do to them to conduct research.
3. I need contact with people who appreciate what I can do to help them. Perhaps I was not cut out to be a bench researcher either.
The General Internist
With these valuable discoveries to my credit, and a "farewell" but no credentials from the obstetrics and gynecology residency program, I jumped in with the unmatched medical students after match day, and landed in an internal medicine residency in Houston in 1980.
I felt much more at home in internal medicine and particularly enjoyed caring for the complex geriatric clientele. During that residency I went out on a home visit with a hospice nurse and was deeply moved by the needs and opportunities to offer meaningful service.
On a geriatrics rotation in Britain, I saw well-established, facility-based hospices run by trained palliative medicine specialists providing superb care. They had medical, nursing, and physical therapy skills and positions we lacked in the United States and used drugs like diamorphine (heroine) and rectal oxycodone, which we could not get at that time.
I was so intrigued and challenged by the opportunities to help and to learn about what was really important in life, that (much to my then wife’s dismay) I abandoned my plans to become a general internist and took a job as a full-time hospice physician in 1983.
The Academic Hospice Physician
The hospice that hired me right out of residency was right in the middle of the Bible Belt, and named New Age Hospice. Not only did the academic medical centers distrust the ideas of facing death and helping patients die at home, but to do this with a bunch of “new age” enthusiasts seemed on the level of crystals and bean sprouts for healing cancer. The hospice also had great difficulty paying the electric bill, much less payroll, until we proved that we could actually provide good care.
We eventually changed the name, built a building across the street from the world’s largest cancer center, and developed a teaching program.
With the help of hospice colleagues and inspiration from mentors I met through the American Academy of Hospice and Palliative Medicine (Balfour Mount, Gerald Holman, Robert Twycross, Kathy Foley, Richard Payne, and others), I learned to provide effective care for patients in the final stages of life. Some dedicated, kind physicians agreed to work with me at the hospice. We took great care of many Houstonians and out-of-town visitors in their final days of life. I will never forget their stories.
It became obvious that we needed much more evidence to base our specialty on, and in Estes Park, the new Academy of Hospice Physicians discussed forming a network of research hospices to do randomized trials and pool data. I took on the role of principal investigator of three ambitious randomized controlled trials, none of which were completed (Mexilitine for Neuropathic Cancer Pain, Forgiveness for Anger and Hopelessness at the End-of-Life, and Oxycodone for Dyspnea in Advanced Congestive Heart Failure.)
On Perfect Hindsight
I wish I had learned sooner:
1. Doing good research requires knowledge and skills that are hard to "pick up" while in active clinical practice.
2. Randomizing desperately distressed patients to anything less than "the best you have" is a nonstarter. (I found myself refusing to offer study participation to my own patients because they were "too sick"!)
3. Hospice patients have great difficulty filling out long (or even short) outcome measuring instruments and rarely complete extended interventions like crossover trials.
4. Cancer center Institutional Review Boards want patients informed that a study is for "terminally ill" patients, and oncologists in such centers can rarely identify anyone they are willing to label this way.
5. Returning money to foundations that entrusted you with scarce research funds because you could not recruit enough patients is painful and embarrassing (and does not further the field).
Changes for Hospice and for Me
With competition from 40 new hospices in Houston and the expenses of running a large inpatient unit, the hospice found itself losing money. When the cost-cutting made it impossible to provide adequate care, I made a valiant stand and was summarily fired in late 1999. The hospice lost its license to participate in Medicare 2 years later, after repeated complaints from patients.
I was fortunate to be able to begin work for Baylor College of Medicine at the beginning of 2000.
A brief foray into academic medicine taught me more valuable lessons:
1. Hospital medicine changes a lot in 20 years (thank the Lord for bright fellows!).
2. Hospital physicians use mental clarity at 7 AM to screen for many organ failures and toxicities, and thus do not appreciate consultants who prescribe enough medication to allow sleep-deprived patients in pain to rest.
3. Consultants who make the attending uncomfortable with their suggestions or prescribing are not consulted often.
4. One physician cannot adequately staff a 24-7/365- day consultation service, teach, and do quality research.
Career Death and Rebirth
After the above lessons began to sink in, I began dreaming of an outdoor adventure. I decided to bicycle to the foot of the Appalachian Trail, hike it to Maine and bicycle home, then do the same with the Pacific Crest Trail in the West. My amazing wife, who never enjoyed any outdoor sport, found herself on the back of a tandem bicycle that took 7 weeks to get from Houston to Maine and 5 weeks to get from Houston to San Diego. She even loaded up a backpack to walk with me from the border of Mexico, through California, Oregon, and Washington along the Pacific Crest Trail-and we are still married!
In the woods of northern California, I got the message via satellite phone that the American Academy of Hospice and Palliative Medicine was interviewing candidates for a half-time position. I was excited about the possibility of continuing my efforts to widen the availability of skilled palliative medicine physicians through their programs. The committee was kind enough to schedule the interviews on the hours I could get to a phone booth.
A New Start
I love working for the American Academy of Hospice and Palliative Medicine AAHPM and for Kaiser in Boulder, Colorado, as a palliative care consultant.
My hopes for our field are for continuing growth and depth so that more patients can benefit from these important skills.
I find that my years of work as a hospice physician are quite useful in helping hospitalized patients get symptom relief, understand their choices, and make important decisions about their care. Most of all, I am grateful for the opportunity to learn about the real meanings of life, love, and hope from patients on the final leg of life’s journey.
My hopes for our field are for continuing growth and depth so that more patients can benefit from these important skills. More broadly, I see hospice and palliative medicine bringing back the personal, humane, genuine caring that medical practice needs. If death is recognized as a natural part of life, we may be able to live our whole lives in more harmony with nature? Perhaps this new and amazing field of hospice and palliative medicine will even change the metaphors we use as a society for approaching the end of life, from war-like (fighting a valiant battle with cancer, not giving in, losing the battle), to the ones used by John Muir:
The rugged old Norsemen spoke of death as Heimgang – home-going . . . Myriads of rejoicing living creatures, daily, hourly, perhaps every moment sink into death’s arms, dust to dust, spirit to spirit – waited on, watched over, noticed only by their Maker, each arriving at its own Heaven-dealt destiny. All the merry dwellers of the trees and streams, and the myriad swarms of the air, called into life by the sunbeam of a summer morning, go home through death, wings folded, perhaps in the last red rays of sunset of the day they were first tried. Trees towering in the sky, braving storms of centuries, flowers turning faces to the light for a single day or hour, having enjoyed their share of life’s feast- all alike pass on and away under the law of death and love. Yet all are our brothers and they enjoy life as we do, share Heaven’s blessings with us, die and are buried in hallowed ground, come with us out of eternity and return into eternity. Our lives are rounded with a sleep.
About the Authors
PORTER STOREY, M.D.
Kaiser Permanente and American Academy of Hospice and Palliatve Medicine,
Address Reprint Requests
Porter Storey, M.D.
and American Academy of Hospice
and Palliative Medicine
5290 Euclid Avenue
Boulder, CO 80303