American College of Physicians: Internal Medicine — Doctors for Adults ®

 
Advertisement
Tuesday, June 14, 2016

Thinking beyond hospice

I recently attended the death of a friend at his home. He had a disease that was terminal and untreatable and he and his wife had finally decided on no further medical treatments that would require hospitalization. He was not very old and had been cared for by his children and wife during the previous 4 months that he couldn't care for himself. Time had become short and valuable and he had become weak, so he didn't amend his POST (Physician's Order for Scope of Treatment) to indicate that he wanted no resuscitation, though his wife and family knew his preferences. He had not entered hospice because his needs were adequately fulfilled by his family, friends, his physicians, and home health.

When his wife noticed his breathing had changed, she called me, a friend of the family. I had offered to be available to come over for any medical situation in which they might need a rapid house call. I arrived about 15 minutes later and he had just died. I confirmed the situation with my medical gadgets. We were all sad and tearful and we talked and hugged and talked some more. I called the police, reported the death and the fact that it was expected. A kind and respectful sheriff's deputy came out and took a picture and a couple of statements. I called the local funeral home and a couple of guys who were on call came over with their stretcher and bag and quilt to collect him. About 90 minutes after I got the first call, his body was on its way to the funeral home and thence the earth and eventually the far corners of the universe. We sat and talked as the sun went down.

It was a good death, as much as a death of a vital and gifted person with plans can be good. It was a hospice-free home death, surrounded by family and friends. Such a thing is becoming vanishingly rare, and it made me think. Maybe we could make this easier. Maybe our community could reclaim the wisdom that it takes to facilitate better deaths, with or without hospice, nuanced to our needs and resources.

Hospice care is intended to be a holistic approach to providing support to dying patients during their last 6 months of life. The concept of hospice dates back to medieval times. Wikipedia says that in 1090 there is evidence that places existed which were devoted to care of the incurably ill, staffed by crusaders. There have been institutions for treatment of people who are dying since then, likely because of the clear need for dedicated care for people who are vulnerable and in pain and unable to advocate for themselves. Hospice at home was encouraged by Elizabeth Kubler-Ross (author of the book On Death and Dying), arguing that we shouldn't institutionalize people who are going through a universal life process. Legislation to pay for hospice care passed in the early 1980s in America. Hospice care has increased in popularity, more than doubling the number of patients utilizing the service and the amount of money spent in the last 10 years. This year an industry report predicts that the U.S. will spend over $25 billion on hospice care. (It will also save several times this amount of money by providing appropriate care for the dying rather than futile procedures in a hospital setting.)

Hospice is extremely valuable in our culture which has lost the habit and skills of taking care of the dying at home. They provide a consulting nurse who keeps in touch with both the patient and his or her doctor, providing adjustment of medication to ease suffering and equipment such as hospital beds or shower chairs that may become necessary. They provide 24 hour phone advice and expertise regarding the dying process. They organize volunteers who will spell a caregiver to go out for a walk or shopping and aides who can help with bathing.

Besides being valuable, hospice is also extremely expensive (mostly paid for by insurance including Medicare) and often feels like a one-size-fits-all solution. Hospice is difficult for introverts and people who treasure their privacy. “Going on hospice” can be demoralizing. Hospice is mostly not available to people who are still undergoing life-prolonging treatments such as chemotherapy. The use of pain and anxiety medication often seems heavy handed. I have ranted about some of these issues in the past. All this aside, I am truly grateful for the existence of hospice services and devoted hospice workers who make dying at home and in peace easier.

But I think we can do more and maybe better. My friend who died, and his family, needed his wise friends and his multidisciplinary team organized by his specialist, his flexible and understanding primary care physician and, in the end, me to smooth the difficulties of his passing. It turned out that he needed a bare minimum of medication and remained intelligent and interactive up until nearly his final breath. He didn't need hospice, but he did need help. I think there is support that a community can provide that is beyond what a hospice organization does.

What we need is a network of people in our community who are good for different things, to share with each other and with people somewhere on the dying spectrum what they know. Emergency medical technicians know what needs to be done when somebody dies at home of a terminal disease and so do I, but families of dying people should know too. It would be reassuring. Lawyers know about what is needed to have a valid will. Priests, nuns and other clergy people are skilled in helping people find meaning in the process of dying. There are people in my community who always seem to be there when someone is very sick and they are comfortable with some of the worldly aspects of the end of life. There are people who have special relationships with animals who could give comfort by visiting with a cuddly creature. There are musicians of all description and artists who can brighten a dreary space. People who have recently gone through the death of a loved one might be glad to sit down for a cup of coffee or come along for a doctor's appointment to take notes or ask the right questions. They may know how to make the funeral process less expensive. There are social workers who would be founts of good advice. Some people know about helping write a life history. Some people can do guided imagery or hypnosis for symptoms control. There are needs and solutions I haven't thought of, and somebody in my community knows about them.

When I was pregnant with my second child, we hired a doula. She was a woman who had lots of experience with birth and who helped me with questions I didn't want to ask an obstetrician. She encouraged me, shared stories and sat with me the entire time I was in labor, which was a long time. Because of her confidence I didn't feel frightened and I didn't need labor anesthesia. There are also doulas for the end of life. There are none in my community, but I think there are people with the basic wisdom and experience to be a companion for a patient and family during the dying process. Death can be frightening but it doesn't need to be.

This network of people would not displace traditional hospice, at least not in most cases. It would be a volunteer organization and, with the possible exception of doulas, there would be no requirement to be “on-call.” This would create new connections within our community. There would be unexpected and probably positive consequences. Each person who volunteered would know that, although they are giving now, they will be receiving at some point because death is going to happen to all of us.

The hospice movement that gained steam in the 1980s was very important. It helped move death out of the hospital and the intensive care unit and back home, where we can be surrounded familiar things that bring us comfort. I think we are ready to take the next step. We may be ready to use our collective wisdom to find the meaning in life's end, beyond the mistaken concept that death is a failure of medical technology. Life is valuable in part because we know we will die. Like birth, we only get to do it once. Maybe we can be intentional about it and help each other out by sharing what we do well.

Janice Boughton, MD, ACP Member, practiced in the Seattle area for four years and in rural Idaho for 17 years before deciding to take a few years off to see more places, learn more about medicine and increase her knowledge base and perspective by practicing hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling. Disturbed by various aspects of the practice of medicine that make no sense and concerned about the cost of providing health care to every American, she blogs at Why is American Health Care So Expensive?, where this post originally appeared.

Labels: , , , ,

0 Comments:

Post a Comment

Subscribe to Post Comments [Atom]

<< Home

This is a printer-friendly version of this page

Print this page  |  Close the preview

Advertisement

Share

 

Contact ACP Internist

Send comments to ACP Internist staff at acpinternist@acponline.org.

Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Auscultation
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Iowa City, IA, with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

Powered by Blogger

RSS feed