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.

What is Public Scholarship?

IMG_3174My irreverent answer: work done by nerdy, bookish, abstruse (yes, abstruse), people with way too much formal education who can get over themselves enough to care about the ‘real’ world, what’s going on in it, what they might have to offer it on a more practical level, and what they can learn from that big, scary ‘real world.’

Here is one of the more reverent official answers:

“Publicly engaged academic work is scholarly or creative activity integral to a faculty member’s academic area. It encompasses different forms of making knowledge ‘about, for, and with’ diverse publics and communities. Through a coherent, purposeful sequence of activities, it contributes to the public good and yields artifacts of public and intellectual value.” (From: Ellison, J., and T. K. Eatman. 2008. Scholarship in Public: Knowledge Creation and Tenure Policy in the Engaged University. Syracuse, NY: Imagining America.)

The photo above is of me looking very happy yesterday at the University of Washington Odegaard Library (first floor) in front of my public scholarship multimedia exhibition Soul Stories: Homeless Journeys Told Through Feet.
This is a collection of poetry, prose, photographs, and digital storytelling videos about my work as a nurse providing health care to people marginalized by poverty and homelessness. I understand homelessness at a visceral level, having lived through it myself as a young adult. I also readily acknowledge that just because I ‘made it out of homelessness’ doesn’t mean everyone can, nor that it is an easy thing to do, especially within our society.

The Soul Stories exhibition will be at Odegaard Library (opposite Suzzallo Library on ‘Red Square’) through March 20, 2015. Odegaard Library is open to the public during regular library hours. Many thanks to the wonderful librarians at Odegaard who opened this space for me, and thanks to 4Culture for helping to fund part of this project. I was looking happy in this photograph because this has been the most challenging, fun, and soul-satisfying scholarly project so far in my career.

Public or community-engaged scholarship has never been valued by ‘high brow’ university types, especially not at research-intensive universities. It generally doesn’t ‘count’ as a valid activity for those pursuing graduate degrees. It generally doesn’t get you tenure. But that all seems to be changing, albeit at the achingly slow speed of any change within higher education. The catalyst for this change seems to be less from sudden altruistic enlightenment on the part of the academy, and more from public pressure for universities to show tangible positive impact at the local, national, and international levels. Within medical science scholarship, you can see this outside pressure manifested in the embrace of ‘translational research.’ Research within the realm of public scholarship doesn’t need to be translated.

Within the area of health-related public scholarship, a terrific resource I have used throughout my career is the Community-Campus Partnerships for Health (CCPH).  Check out the free, no membership required resources on their website, especially CES4Health, for peer-reviewed products of community-engaged scholarship.

The Changing Landscape of Health Care Jobs in the United States

IMG_2285Attention all new nursing grads and other health care job-seekers: Today in the NYT there is a fascinating interactive feature “How the Recession Reshaped the Economy, in 255 Charts” by Alicia Parlapiano and Jeremy Ashkenas. It helps illustrate where the health care jobs are in our country, what the average salaries are within different sectors of the health care system, and what the trends are in terms of growth (or decline) of the different sectors.

Using data from the U.S. Bureau of Labor Statistics, the authors illustrate in easy-to-read charts how the number of jobs have changed for a particular industry over the past decade. These data are only available for private industries, so for health care, public health jobs are (unfortunately) not included. The only middle-wage private industries that did not lose jobs during the recession were those within health care.

One of the charts is titled The Medical Economy and here is what stands out to me:

  • Health care industries that were relatively unaffected by the recession and that have shown steady growth include home health care services, outpatient care centers (both general outpatient care and ones specific to mental health), and physician’s offices.
  • Health screening programs (including blood and organ banks) have recovered and grown.
  • Psychiatric and substance abuse hospitals have recovered and grown.
  • General medical-surgical hospitals remained relatively unaffected by the recession but appear to be mostly flat in terms of growth.
  • Specialty hospitals (excluding psychiatric and substance abuse) have recovered and grown, but they have shown a substantial decline in jobs since March 2012 (with a small blip back up over the past few months). I would imagine these changes for specialty care hospitals are correlated with the roll-out of ACA, especially changes to Medicare reimbursement for hospital care.

Take home lesson for people in the job-search mode within health care: Follow the money and look for jobs in the economically healthier parts of the U.S. health care system. Don’t rely on hospitals as the only places for job-searching.

Take home lesson for those of us in the role of nursing (or other health care professions) education: These ‘hard’ economic data provide even more good reasons to recruit and prepare students for work in primary care, community-based, non-acute care settings.


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.

Home Health

Wisconsin Home Care Victory
Wisconsin Home Care Victory (Photo credit: SEIU International)

The Department of Labor is considering expanding the Fair Labor Standards Act (FLSA) to cover the estimated 2.5 million home health aids working in the US. As its name implies, the FLSA mandates minimum wage and overtime pay for employees.

Home health aids assist elderly, ill and disabled persons with shopping, cooking, housecleaning and laundry to help them stay as independent as possible in their own homes—and out of expensive and oftentimes dehumanizing long term care institutions.

Currently, home health aids are considered companionship services, like babysitters, and as such are excluded from FLSA protections. These exclusions benefit for-profit home health and hospice agencies, an $84 billion industry—and growing, thanks to our aging (and dying) population. Republican US Senator Johanns (Nebraska) is sponsoring a bill in Congress to permanently block home health aids from FLSA protection. He is also backing repeal of the Affordable Care Act.

Home health aids are dear to me. I got my start in nursing as a home health aid in the North End of Boston, tending to several elderly first generation Italian immigrants. I was jumping out of the Ivory Tower of Harvard University at the time, on my way to becoming a Harvard dropout. One of my professors of health policy recommended I work for a home health agency to gain first hand knowledge of health care needs in the community. It was hard work and didn’t pay enough to keep me working in it for long. But it was rewarding and the experience convinced me to apply to nursing school.

Home health aids are a part of my life today. My 89-year-old father with advanced congestive heart failure is able to live at home with the help of home health aids. They are skilled, dedicated, and caring workers and not some glorified passive ‘companions’—and they deserve fair labor standards.

(see Borris and Klein’s NYT Op-ed “Home-care workers aren’t just ‘companions.'” 7-1-12)

Aging (and walking) In Place

It has been a year since my father first started showing symptoms of congestive heart failure. His symptoms started last August when he was visiting me from his home in Richmond, Virginia. His symptoms worsened as he did his daily walk, and necessitated a visit to the local emergency room. Last September his cardiologist gave him 3-6 months to live. My first blog post “A Practical Man and Modern Medicine” was about the end of life decisions my father and I were facing—and my frustrations over the fragmentation of the health care system as we wended our way through the labyrinth. The term “rough crossings” for these health care transitions is an apt one. It was difficult for me and I am a health care insider. He was briefly hospitalized in September at the same university hospital where I ‘trained’ as a nurse and nurse practitioner. I coordinated his home nursing care and then (briefly) hospice care—and convinced my father to give up driving. I thanked bad boy Clinton and my university for FMLA (Family Medical Leave Act) so that I could be with my father during what we were told were his final months of life.

A year later, my father is back here in Seattle for a visit. He ‘graduated’ from hospice and home heath after only a few weeks—he was too healthy and independent. So much for medical predictions of mortality. He has come out to Seattle every year for the past fifteen years. He leaves a clunky pair of walking shoes here so he doesn’t have to pack them. A few weeks ago, while he was still in Virginia, he developed pneumonia. He refused to be put in the hospital for it, so my brother nursed him back to health—and then put him on a direct flight from DC to Seattle. Every day since he arrived (rain or shine—it’s Seattle, so it is mostly rain), my father straps on his walking shoes, grabs the lightweight REI collapsible stool I gave him, and heads out for a 30-minute walk. When he gets short of breath, he sits down on his stool for a while and checks out the neighborhood gardens. Back in Richmond, he continues to live at home, relying on neighbors, church friends, my brother and sister-in-law to help out with things like getting groceries and driving him to the bank. He continues to have a huge garden in his backyard which he tends every day. He rides his stationary bicycle nine miles a day and walks outside when it’s not too hot. A retired minister, he visits “really old” people in nursing homes and vows never to live in one: “They just sit there all day and look really bored.” He has a point, and one that is supported by research: aging in place can be cheaper and have better outcomes than the alternatives of nursing homes.

Most people prefer to stay in their own homes or apartments for as long as possible. There is a bourgeoning business related to smart home design and various technologies to support people aging in place. Besides the home monitor, which measures my father’s blood pressure, oxygen saturation and heart rate daily—and which he loves—there are now smart toilets (which measure urine sugar levels) and smart rugs (assume they are wall-to-wall—detect changes in an older person’s gait for fall prevention). But then there is the issue of informal care (unpaid care) by relatives and friends, because that is what allows aging in place to not be dying alone in place.

Current estimates of the economic value of informal care in the US puts it at $306 billion a year, compared with nursing home care spending ($115 billion/year) and formal home health spending ($43 billion/year). Source: RWJ and Peter Arno, “Economic Value of Family Caregiving, 2006.  Upwards of 70% of the informal care workers are female, although the proportion of male caregivers is steadily increasing. Anecdotally, I think that FMLA is partly responsible for this evening out of the gender disparity in caregiving—an explicit purpose of the act. Also, just as in my parents’ case, older married men are becoming the informal caregivers for their wives, as men begin to outlive women. There is growing recognition of the rewards—but also of the burdens—of informal caregiving. Most informal caregivers are spouses or adult children of aging parents. They rarely have any training or experience in caregiving of the sort needed for aging in place, and it is difficult to find needed support for the work they do. Informal caregivers have the stress of lost wages/lost retirement savings, the stress and isolation and physical demands of in-home care, and they often neglect their own health.

Nurses have long been the backbone of home care services. Home nursing services have increased in the US with the growing geriatric population, as well as with the reduction in hospital stays for all patients. Nurses, along with medical social workers have become geriatric case managers, an unlicensed and unregulated ‘profession’ providing care coordination and links to needed community-based services for geriatric patients and their families. There is a National Association of Professional Geriatric Case Managers with a website and searchable database. I checked today and there a four Geriatric Case Managers in Richmond, two of them are RNs and two are social workers. From what I understand, their services are not reimbursable by Medicare or any other health insurance. I’m not convinced of the value of their services.

The Affordable Care Act included some provisions for home care. For instance, the CLASS Act (Community Living Assistance Services and Supports) is a voluntary insurance program for home care through a voluntary payroll deduction plan. It was scheduled to go into place January 1, 2011. After a five year vesting period it would pay up to $50/day for non-medical services and supports necessary to maintain community residence. Currently, Congress is trying to repeal this act.

Helpful websites/blogs:

Health Affairs Blog, “Informal Caregiving by and for Older Adults” by Donna Wagner and Emiko Takag (Feb 16th 2010) website and blog by Patrick Roden, RN, PhD

Aging Well Consortium website and blog by Liz Taylor, Seattle-area journalist and advocate on aging issues. An advocate of ‘intentional aging.’

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….


The Hospital/ Monday October 11th, 2010

Surviving the hospital: Yesterday I brought my Dad home from the hospital. He insisted on opening doors for me and for others as we found our way to the parking garage. He was disappointed he didn’t have surgery. In the 2.5 days he was an inpatient at the teaching hospital he was seen by a total of four doctors, two nurse practitioners and one physician’s assistant all at different times and mostly asking us what the other providers had said (not quizzing us–they really didn’t know). It was confusing for my Dad who kept getting his hopes up that they could do cardiac surgery and fix him up. I was his health care agent and tried to be his advocate. It was exhausting to help him wade through it all. I realized just how messy these “breakpoint conversations” are for everyone and how our health care system really is not set up to help facilitate them. For instance, in a hospital there really is very little in the way of real patient privacy. My Dad had a shared room with a cloth curtain between the beds, which were three feet apart. Without really wanting this information, I now know all of the roommate’s medical conditions and major family situations. He knows ours. I was uncomfortable having the difficult patient/family/provider conversations we were having knowing that Dad’s roomate and his wife were listening. I know it changed what I felt like I could say and ask. At the climax of the main conversation with Dad’s cardiologist (when he was telling Dad his heart was like the engine in an old car–unreliable except to run around town perhaps), the roomate’s colostomy bag exploded and his breathing/forced air machine started beeping loudly. Somehow the conversation continued even though no one could breathe or hear anything. I understand that exploding colostomy bags happen and things hit the fan and you can’t control situations, but this was on a ‘regular’ medical floor and not in intensive care. Surely clever engineers/designers can come up with solutions to the space and privacy issues in hospital rooms, even if they have to be shared rooms. My Dad was ambulatory and the doctor could have taken us to a private consult room somewhere for this sort of conversation and I am sure that would have made it easier for everyone. I was going to suggest it at the time but realized there were no such rooms. I pushed for home nursing care for my Dad and that starts tomorrow–it can segue into hospice/supportive care when the time comes. I had to ask for patient education materials before we were discharged and there really is no clear plan for follow-up with anyone. The home health nurse comes tomorrow and I am hoping that he or she can help pull things together better than they have been so far.