When we talk about the care of the elderly we are often focused on the expense of care at the end of life. There is no question that this is a serious issue that deserves consideration since it may constitute as much as 11% of all healthcare spending. Just knowing how much we spend is hard to calculate since definitions of the population vary. Are we talking just about the frail elderly, or are we including the mid forties victim of ALS and the twenty five year old that is lingering on a respirator for many months following a tragic auto accident?
As focused as you may think I am on finance, I am not thinking about the cost of end of care life. I am also not talking about forced considerations on anyone who is unfortunate enough to have no realistic chance of returning to what they would consider to be a future that any of us would consider acceptable. I am not thinking about or advocating euthanasia. I am thinking about the care received by those who are waiting to die of the natural progression of the combination of their age and the gradual loss of the energy that we might poetically call “life forces,” or might medically describe as the irreversible failure of multiple organ systems.
Over a long career in practice I objectively observed the process in hundreds of people who honored me by thinking of me as their physician. Over recent years I have been more subjectively affected by observing the realities of the care for the frail elderly through the experience of many close relatives and friends, but most specifically my in laws and my parents. I am now watching my father endure his last few days on earth in a nursing facility and it suddenly occurs to me that I am much like a batter standing in the “on deck circle” closely watching what the opposing pitcher is throwing to my teammate who is at bat now. I am “up next” and will soon be contending with the same pitches.
My wife and I are fortunate to have had parents who have enjoyed long lives, but all of them have spent their final days in a nursing facility. My father-in-law was 89 when he was diagnosed with metastatic melanoma when he presented with neurological systems. He was a heavily freckled Irishman and the primary was never identified. He was discharged to a nursing facility where he stayed for the last ten weeks of his life. His story was not unlike that of many Americans. He had worked all of his life in a factory in Pawtucket, Rhode Island and then in retirement worked as a custodian in a local elementary school. When he was moved to the nursing facility he had $34,000 dollars of savings. My wife was her father’s landlady. We had purchased the double decker where they had lived for many years to prevent them from having to move when their landlady died. By law $17,000 was his half of the family’s joint savings. His portion covered some of his care, but he was forced to be on Medicaid before he died.
My mother in law lived until she was 90. About a year after her husband had died it became clear that her memory disorder made living alone impossible. After her share of the savings was gone, Medicaid paid for her last three years in a lovely facility that had once been the same hospital where she had worked for many years as an LPN in the newborn nursery. Each time we told her where she was she thought it was a lovely fact that she had never heard before. One of the most difficult decisions my wife ever made was to decide to end the biweekly trips to the hospital that occurred in the last few months of her life and to allow her to pass away in the facility. The care she received was always excellent. Even in her dementia she was always happy and enjoyed socializing. She was given a private room despite the fact she was on Medicaid because her roommates were so disruptive it was hard for her to sleep.I wonder if that great facility still is able to carry on its mission in as noble a manner over ten years later.
My mother, who is pictured in the header in a hospital bed in her own bedroom back in 2012, entered an excellent hospice program at age 93. She had multiple admissions to her local hospital for syncope, symptoms of CHF, inflammatory bowel disease, and recurrent urosepsis. She had crippling arthritis of her back, hips, and knees. When she was able to walk with a rolling walker her upper body made a right angle with her crooked legs and out of line hips. It was painful to watch her go to her many medical appointments. She would inch along from one room to the next with her walker and get on the chairlift elevator that would lower her down the back stairs to the car in the garage underneath their one floor living area. She would slide into the car with a grimace of determination on her face that hid the pain she was enduring. Finally she said, “Enough!” Hospice was called. Her home was transformed. All her meds were stopped. The next seven months were the best of her last five years. She never had another x-ray, blood test, or doctor’s appointment. Two weeks before her death she made one last EW visit for management of seizures that would not stop. After that trip to the emergency room she was in an inpatient hospice facility for a week, then out for a few days, and then in for good. It was a lovely, peaceful place that sat in a wooded park at the base of Kennesaw Mountain.
In retrospect my father in law received unacceptable nursing care. We were greatly pleased with the care of my mother in law and mother. The last month for my father who is very near the end of his life raises concerns. If you read these notes regularly, you know that he is in one of the nicest facilities imaginable. The facilities are beautiful. It is a new “state of the art” complex on a 130 acre campus of rolling hills, gardens, and manicured trails through the woods. For those able to live alone or with minimal assistance there are accommodations that range from single family homes with double garages that will accommodate two cars and a golf cart down to efficiency apartments. For those requiring “memory care,” post hospitalization rehab, or even long term custodial care the physical plant is fabulous and new buildings are nearing completion. Until a person requires total care there are rare complaints although there is understandably an extremely low threshold for sending anyone with a change of status to the hospital. 24 hour nursing advice is available and there is primary care on site. In the early 90s I was involved in the planning of such a facility that would have been a collaboration between Harvard Community Health Plan and Wellesley College. I am sorry that it never happened.
What follows are not complaints against Abernethy Laurels, the place where my father lives and gets his care and is now in hospice. I am concerned about problems that I believe affect us all and lie outside the ability of any individual or institution to resolve. They are societal issues that will impact all but the ultra rich sooner or later, either directly, or through someone for whom we have great care.
Beyond the usual fees associated with his home, which I would call condo fees plus a little extra care, the cost of my Dad’s care is now more than an additional $10,000 a month. That’s not a complaint. Medicare and Medicaid spend an average of $650 a day or $19,500 a month for “generalized inpatient care that cannot be provided in any other setting” for the care of the institutionalized frail elderly at the end of life. Whether that is true or not, the real number is high, and Dad’s deal is good. Dad would not like to know what he is paying. He has always been politically conservative and heavily into self reliance; so, he would pay up, and he certainly has the resources. He needs round the clock care that is impossible to organize where he lives in his home at any price. My father has lost so much ground over the summer that his one year old great grandson does more independently than he does. He needs help for everything. That is the issue that exposes the problem that faces us all. We have a tremendous deficit in the workforce necessary to care for the frail elderly.
Many of us try to structure safety nets that will protect us at the end of life. Long term health insurance for care at the end of life is attractive for many. My wife and I can’t buy long term coverage because of “preexisting conditions.” We are left with the plan my Dad has used which is to try to accumulate enough resources to carry us through to the end. What few people realize is that the outcome you will experience is unlikely to be a function of either the insurance you have or the nest egg you have accumulated, but rather the resources that are not available to purchase at any price.
Even if we have means either from insurance or from a healthy savings plan, when the time comes that we need care, the rate limiting factors will probably not be a function of and ability to pay but rather a function of supply. My father’s care has not been compromised by his ability to pay or even by a lack of access to a beautiful facility. The defining issue is a workforce shortage. The nurses and clinical nursing assistants who see him appear overworked and exhausted. I have tried to fast forward 25 years from now when I hope to be his age and imagine what will be available to me and my wife at the end of life.
I was born on the leading edge of the post WWII “baby boom.” I hope to be the last surviving member of the class of 1963, but even if I am not, I will still be in the middle of a huge wave of increased demand. They built more schools for us. They trained and hired more teachers for us. Industry and the professions were glad to have us in the workforce. Will we or those coming after us create safe, respectful places that are adequately staffed for every member of the growing “frail elderly” demographic? Will the reward for taking lisinopril, hydrochlorothiazide, atorvastatin, and aspirin, for years to avoid a stroke or an MI be to end my days narcotized with sedatives so that I won’t be a problem for an understaffed facility?
Nursing home understaffing is already an identified problem. I do not think that the solution is to sue nursing homes that often can’t find employees to hire. In an economy with three or four percent unemployment exists even a living wage may not be enough to stimulate the growth of a larger pool of capable nursing assistants who are willing to turn patients often enough to prevent bed sores, much less give adequate baths, frequently change diapers, assist in transfers, help with feedings, and comfort agitated and confused patients rather than resort to something just short of general anesthesia.
I do feel like I am standing in the “on deck circle.” My turn at bat is probably coming sooner than I would like to think. So is yours. It feels like what the current batters are being thrown are pitches we may not be prepared to hit. What do you suggest we do?
