Boots On, For My Father

IMG_1232 - Version 3On Father’s Day, here is a piece I wrote about my father’s last years of life, and his quest to die at home, with his boots on, which he did last fall, despite a whole Southern Gothic region-full of subtext and intrigue. If you haven’t yet read Atul Gawande’s powerful and important book, Being Mortal: Medicine and What Matters in the End (Metropolitan Books, 2014), I highly recommend it. The following essay, “Home Death,” I wrote appeared in the Johns Hopkins Public Health Magazine (Spring 2013).

“Natural death, almost by definition, means something slow, smelly and painful. Even at that, it makes a difference if you can achieve it in your own home and not in a public institution.” ~ George Orwell

In his essay “How the Poor Die,” Eric Arthur Blair (pen name George Orwell) describes his month-long stay in a French public hospital in the winter of 1929. He was treated for pneumonia in a crowded open-ward public hospital, where he observed many indigent patients dying under the indifferent care of “slatternly nurses” and doctors and medical students “… with a seeming lack of any perception that the patients were human beings.” He fled the hospital before being discharged, but the hospital was a probable source of the tuberculosis that would later cause his death, at age 46, in a London public hospital.

Like the majority of people in the U.S., my father would rather not die in a hospital—public or private. Studies consistently indicate that more than 80% of patients wish to avoid hospitalization and intensive care treatment during the terminal phase of an illness. In most cases, hospital deaths are considered to be less than ‘good deaths’ because they are not where patients want to die, combined with the high-cost of hospital end-of-life care.

My father would rather die at home with his boots and gardening gloves on, surrounded by family and trusted caregivers. At eighty-nine years old and suffering from the ravages of advanced congestive heart failure, my father is one of the burgeoning number of the ‘very old’ frail elderly facing end-of-life decisions. And I am one of the even larger number of baby boomers approaching retirement while simultaneously helping care for an elderly family member. My father lives in Virginia; I live across the country in Seattle. Nevertheless, my father appointed me his health care proxy. I naively thought that being a nurse practitioner with an advanced degree in public health would help stack the odds in favor of my father having the home death he desires.

I know what it is like when end-of-life care works well. Four years ago I helped my mother have a relatively peaceful home death in hospice. She was eighty-five years old and died of breast and lung cancer. End-of-life predictions are, of course, much more accurate for patients with cancer than they are for patients with congestive heart failure. I had to intervene with her oncologist to stop the chemotherapy that was clearly doing more harm than good. But I expected that. Oncologists are programmed for aggressive treatment and have a difficult time, as the writer Atul Gawande says, letting go. My mother died six weeks after stopping chemotherapy, and two days after learning that her vote helped turn Virginia for Obama. Hers was a good death.

Although I was able to take time off from my job to help my mother in her final illness, my father was her primary home caregiver. Now, with my father living alone, he is hiring caregivers so he can qualify for home hospice. In the past six weeks he has moved through four different health care settings: acute care teaching hospital, nursing home for physical rehabilitation, back to his private home with visiting nursing, and now with home hospice. Besides Medicare, my father has good supplemental private health insurance, and he has sufficient savings to cover out-of-pocket expenses.

Despite my father’s resources, helping him navigate his final days has been a Kafkaesque nightmare tinged with perverse humor. Having worked within the U.S. health care system as a primary care provider for thirty years, I was prepared for the lack of care coordination across health care settings. I was even prepared for his myriad health care providers misplacing his Advance Medical Directives. I keep a scanned copy with me at all times to e-mail or fax it to whichever health care site he’s currently in. But I wasn’t prepared for April Fools’ Day this year.

For transparency and context I should add that I teach health policy to nursing students at a major academic medical center in Seattle. On April Fools’ Day, a Sunday this year, I was in Seattle preparing notes for my upcoming class presentation on patient-centered care. One of my father’s neighbors in Virginia called to tell me my father had skipped church to go to the emergency department of the nearby teaching hospital. He had been complaining of shortness of breath and not feeling well. It takes something serious for my father to miss church.

When I called the hospital to find out his status, the emergency department clerk told me I needed to tell her my father’s “secret HIPAA patient password” before she could even tell me whether he was in the hospital. She added that they strictly enforce this password because the hospital has so many patients involved in gang shootings and domestic violence. She didn’t change her mind when I pointed out that my father was an eighty-eight year old widower and retired Presbyterian minister who had signed his Advance Medical Directive forms appointing me his health care prox in their hospital administrative offices less than a year ago. She said they had no record of it and they had to treat all patients the same, so my only option was to come to the hospital in person. I did make a notation for my health policy class that this interaction was a good example of the need for improved patient-centered care, as well as for more appropriate use of patient privacy rules.

By the time I got through the hospital gatekeepers to be able to talk to my father, a cardiac surgeon had been called down to the emergency department and had convinced him to sign consent forms for a high-risk, high cost, low-to-no-benefit, quasi-experimental transapical arotic valve replacement. Less than six months post-surgery, my father was back in the same teaching hospital for rapidly accelerating heart failure, and I was flying in from Seattle to advocate transferring him to home hospice.

In its current form, our healthcare system conspires against the possibility of older people having a natural, good death at home. While there are pockets of improvement in terms of fewer hospital deaths for the very old, there are accompanying shifts towards more patients seeing ten or more medical specialists in their last six months of life, greater use of intensive care units, and more patients dying in nursing homes. As with my father’s experience, much of the blame falls on teaching hospitals: tenacious places known for medically aggressive treatment. I get the argument that this aggressiveness is what drives medical innovation and makes U.S. high-tech medical care among the best in the world. But when it comes to the care of the very old, that argument does not hold up—unless the elderly are donating their bodies to medical science before they are dead.

According to many studies (reflected in the Dartmouth Atlas of Health Care data) the number of teaching hospital beds in a region is associated with a higher percentage of hospital deaths without a concomitant improvement in overall population health. If the primary mission of teaching hospitals is to educate our future health care professionals, what is it we are teaching them about death and end-of-life care? Perhaps it would benefit everyone if we who work in academic medical centers remember that our students will soon be taking care of us in our own final days.

Josephine Ensign, MPH ’92, DrPH ‘96, is a nurse and writer who teaches health policy at the University of Washington in Seattle.

Approaching Death

Check out Kimberly Condon’s essay “Approaching Death” (from the anthology I Wasn’t Strong Like This When I Started Out: True Stories of Becoming a Nurse, edited by Lee Gutkind, In Fact Books 2013) reprinted today in Slate. In the Slate version the full title includes “A nurse goes from the ER to hospice, and changes the way she thinks about life and its end.”

Congratulations Kim!

Transitions

Road cones
Road cones (Photo credit: Christchurch City Libraries)

Transitional care: part of care coordination across time and settings, specifically for patient populations at high risk for poor and costly outcomes as they cross health care settings.

There is the ideal (smooth, patient and family-centric) transitional care and then there is reality.

Case in point is my elderly father with congestive heart failure—the diagnosis associated with the highest Medicare health care costs. My father has been in four different health care settings over the past six weeks. These include an inpatient acute care hospital, a skilled nursing care/rehab facility, home nursing care, and as of today, home hospice. I have worked as a nurse in three out of four of the specific health care systems he has moved through. I know something about how they work—the key people to contact—the questions to ask—the code words to use to get things done. In spite of all that—plus flying cross-country to do much of this care coordination in person—it has been more than just difficult. As my father says, “There’s been a mix-up everywhere I go—it’s as if none of them communicate with each other.” Indeed, it shouldn’t be this hard. I keep wondering: how do people with fewer resources do this?

The metaphor for ‘good enough’ healthcare transitions that has occurred to me are those orange safety cones lined up re-directing traffic. Knowing the more ideal freshly paved road of smooth health care transitions is a ways off in the future, all I’ve yearned for are orange safety cones. I did finally see one bright orange safety cone today. It came in the form of a wonderfully compassionate male hospice nurse who spent over an hour patiently and respectfully talking to my father about quality of life–about what matters most to him and how hospice can help support him to pursue those things. Finally! Sanity and clear, direct communication from someone in the health care system. I thanked this nurse and asked him how long he’d been in nursing–14 years–and what he did before nursing–he owned/operated a bar. There are many paths to becoming a really great nurse.

Head Banging and Health Care

This past May I quit my clinic job where I had worked for 16 years. It was a community health clinic that I had loved for 14.5 of the 16 years. The last 1.5 years of it were a downward spiral of administrative dysfunction leading to moral distress and burnout for me. Towards the end I felt as if I had a bad case of autism and was banging my head against a wall, the wall being an unresponsive, uncaring safety net system. I had the luxury of being able to afford to quit. I don’t miss the clinic, and I am unsure if I will ever work as a clinician in our health care system again. This is after almost thirty years of continuous work as a family nurse practitioner in various safety net community clinics across the US. I love patient care and do miss that.

 

I was reminded of the head banging metaphor this morning as I continued to try and coordinate sane home health care for my father. His family physician ordered hospice last week. The hospice and home health are within the same agency in his hometown. Hospice called home health to discontinue home health and start hospice. But before hospice could even start, my father’s cardiologist cancelled hospice. The cardiologist had ordered home health after my father’s hospital stay, but now it has been discontinued without him even knowing it. Meanwhile, my father continues to fall at home and his hand wound from an earlier fall is not healing. The home nurses have never even looked at his hand because they don’t have a doctor’s order to look at his hand—only his heart. I am back in Seattle trying to catch up on my job and with my family. The home health and hospice agency staff people call me because my father doesn’t hear well enough to answer his phone when they call him. My head hurts….

 

Complications/ September 28, 2010

Yesterday I started reading Atul Gawande‘s book Complications: A Surgeon’s Notes on an Imperfect Science. It is good and I briefly considered taking it with me to Virginia to read while I am caring for my Dad. The cover photograph is a bit disturbing to flash around in a hospital waiting room though. I decided to take something more soothing and distracting, so Dicken’s An Uncommercial Traveler is accompanying me instead. His chapter “Nurse’s Stories” has given me the idea to tell my father ghost stories when he’s in the hospital.
I have read all of Gawande’s recent New Yorker essay: “Letting go: what medicine should do when it can’t save your life” (available at Gawande’s website: http//gawande.com). His main point in this article is that US doctors–and US patients— just aren’t very good at “knowing when to stop” expensive treatments even when the benefits aren’t clear. What interested me the most was his reference to a study of Medicare patients with heart failure who I assume were randomized to either conventional or hospice care. The patents in hospice care lived on average 3 months longer than the conventional care patients (and I also assume with better quality of life). That study finding may come in handy this next week in discussions with my Dad and with his doctors. Gawande discusses how the tough ‘breakpoint discussions” (when to stop fighting for time/life) between patients and doctors aren’t done very often because the discussions take time and aren’t reimbursable/billable activities. I also think it is because doctors often view these discussions as failures because they are hard-wired for curing and not for caring. I am interested to find out how my Dad’s doctors handle this–and how my Dad and I will handle it. A difficult conversation or series of conversations. My Dad told me last night he’s getting tired more easily and he hopes the cardiac surgeon can fix that soon.