HealthCare Costs and Choices in the Last Years of Life

Many U.S. patients endure pointless treatments because their doctors don’t know how to talk about death. But that’s changing as hospice and palliative care are gaining ground.

By Ian Morrison

As a Scottish-Canadian-Californian, I have always said I have a unique perspective on healthcare and all things to do with healthcare including death and dying, because the Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.

I wrote that joke more than 20 years ago and continue to use it because it tells a fundamental truth, that Americans and the American healthcare system are uncomfortable with the inevitability of mortality.

Patients and families consistently report preferences to die peacefully at home, but all too often we die in hospitals with a highly medicalized and uncomfortable end.  This column will explore the economic and societal issues of issue of end

of life care for an aging society. How does the US rate versus other countries and what are the opportunities for hospitals and health systems to improve care at the end of life.

Care and Costs in the Very Old

Let’s start with a fact base. We are all going to die. And the chances are that more of us will die at an older age. By 2050 the number of people on Medicare ages 80 and older will nearly triple, the number of people in their 90s and 100s will quadruple. Recent analysis of Medicare claims data (excluding Medicare Advantage enrollees) conducted by the Kaiser Family Foundation

found that Medicare spending rises with age and peaks at 96, declining slightly at older ages. Spending at age 96 is $16,145, more than double the per capita spending at age 70 ($7,566). Even excluding those who died in the given year, the pattern persists. Interestingly, the peak age of spending varies with the Medicare service line for example, inpatient per capita spending peaks at age 89, part B and D drugs at 83, and outpatient at 83. Services such as hospice peak at

104 years of age, SNFs at 98 and home health at 96.

We are living longer and consuming services at an increasingly intense rate well into our 90s. And this KFF analysis by their own admission underestimates the healthcare costs of the very old because it does not include Medicaid which is the principle payer for nursing home expenses. Indeed, CMS develops estimates of age-specific cost estimates for all expenditures for all payers that shows between 2002 and 2010 per capita spending for those aged 65-84 grew 36% from $11,692 per capita to $15,857 per capita, while per capita spending for those over 85 grew by 38% from $25,192 to $34,783 over the same period. This reflects a pattern of rising age specific utilization rates that has been documented in many countries including the US, namely that over time we treat older generations more intensely.

International Comparisons

Most other developed countries are much older than we are…I don’t mean castles and battles, I am talking percentage of the population over 65. From Scandinavia to Japan many developed countries have over 20% of their population over 65 compared to only 13 percent in the US.

And as we stated they are experiencing the same phenomena we are of upward-bending age-specific utilization rates, which in layman’s terms means they are doing more for the average patient age 75 than they did 10 years ago in Scandinavia, Germany, France and so forth. The rates are probably much steeper in the US but it is difficult to get reliable age specific data for international comparison.

One recent window on international differences in care for the elderly is provided by the excellent work of the Commonwealth Fund who conducted international surveys of the elderly in 11 countries and found that:

“US older adults were sicker than their counterparts abroad.

Out-of-pocket expenses posed greater problems in the United States than

elsewhere. Accessing primary care and avoiding the emergency

department tended to be more difficult in the United States, Canada, and

Sweden than in other surveyed countries. One-fifth or more of older

adults reported receiving uncoordinated care in all countries except

France. US respondents were among the most likely to have discussed

health-promoting behaviors with a clinician, to have a chronic care plan

tailored to their daily life, and to have engaged in end-of-life care

planning. Finally, in half of the countries, one-fifth or more of

chronically ill adults were caregivers themselves”

Interestingly, we may be behind other countries in primary care provision and out of pocket burdens but we are seemingly ahead in prevention among the elderly, chronic care planning and in end of life planning. All of which seem to be positive attributes.

Strikingly, the US elderly seemed to be sicker with 68% of US elderly report having two or more chronic conditions compared with the next highest Canada at 56% and the lowest the UK with only 33%. It may be we in the US look for more things and get diagnosed and treated more aggressively rather than a pure epidemiological phenomenon.

As my old friend Bill Rosenberg of PWC likes to say: “Good health is a state of incomplete diagnosis”. 

Healthcare Costs in the Last Year of Life

What about the last year of life isn’t that where all the money is? As policy guru Zeke Emanuel wrote in a New York Times editorial in 2013:

“Wrong. Here are the real numbers. The roughly 6 percent of Medicare patients who die each year do make up a large proportion of Medicare costs: 27 to 30 percent. But this figure has not changed significantly in decades. And the total number of Americans, not just older people, who die every year — less than 1 percent of the population — account for much less of total health care spending, just 10 to 12 percent.”

So the last year of life is not the only source of high spending rather it is part of a pattern of intense medicalization of aging and disability for an aging society.


Confronting Mortality: Three Gurus

Mortality is getting attention. Atul Gawande, arguably the leading medical writer, thinker and communicator of our generation has taken on the issue of end of life care from his perspective as son and surgeon.

Gawande’s new book Being Mortal, as well as his Frontline film and accompanying articles and interviews beautifully document the pain and dilemmas of dealing with mortality from the physician’s, patients and family members perspectives. On the one hand, doctors want to provide hope to patients that they can be returned to their lives whole and healthy. On the other hand, physicians understand (when patients often do not), that the chances of treatment and interventions delivering on that promise are often pretty slim. And that particularly for those of advanced years or with serious medical conditions such as advanced cancers, death is more likely than a return to a full life. Even when doctors know the odds they find it hard to talk about it. And all too often the medical system just takes over and we keep doing things to patients without them fully realizing that they are not going to get “better” in the true sense of the word.

Gawande’s stories of his own and his colleagues’ patients as well as the experience of his own father’s illness and death poignantly portray the key dilemmas of being mortal.

Patients, families and providers are ill equipped to have the candid, open dialog about preferences, probabilities and planning for the end. Instead, all too often physicians “do their best” or “do everything they can” but still come up short of preventing mortality, while in many cases aggravating morbidity and eroding the quality of life remaining.

Hope is a wonderful thing. False hope can be cruel.

Gawande’s work reveals that end of life care is about listening to patients and engaging them in honest dialog about options and outcomes. Easy to say, but excruciatingly hard to do, and I salute those who do this work everyday with skill and compassion.

Atul Gawande will be one of the Keynoters at this year’s AHA Health Forum Leadership Summit in San Francisco and I look forward to hearing his views.

Another high profile healthcare guru, the aforementioned Zeke Emanuel, drew a lot of attention for his recent Atlantic article explaining that he wanted to die by 75. I put it in my calendar to check in with him when he is 74.

But as an oncologist and bioethicist, as well as a leading health policy leader, Emanuel is remarkably well qualified to make the case that longevity without vitality is overrated. His general point is that we can’t really expect “the compression of morbidity” (a short period of unpleasantness at the end of a high functioning life) which bursts the bubble on what he terms a “uniquely American idea”.

I have many friends in their late 70s and 80s who despite the aches and pains that all of us are too familiar with are high performers, still enjoying golf, ice hockey (the Canadians, eh?), skiing, sailing and even marathon running.  They are active and engaged.

Indeed, the Blue Zone movement identified enclaves around the world where the combination of never retiring from work, walking, social engagement, a glass of wine and a nap every afternoon seemed to lead to longevity without impairment. That’s my plan.

But, Zeke is probably right, most of us won’t be that lucky.

My third guru on mortality is my old friend Richard Smith, doctor, writer and philosopher king who served as editor of the British Medical Journal for over 20 years and then became a globe-trotting evangelist for the improvement of chronic care. Richard is a blast to follow on Facebook and Twitter: erudite, enthusiastic and engaged in multiple issues of health and society on a global basis and he’s funny as hell. For the last few years Richard has become very interested in death, but not in a morbid way LOL. He emphasizes the role that death plays in life’s journey and draws from the great poets and writers of how mortality and morbidity are all part of being human. Richard’s central thesis is that overt and unwarranted medicalization of the human journey may be counterproductive and harmful. Enjoy life while you have it, but embrace the whole journey, including death.

Encouraging Trends

There are encouraging trends in care for the elderly at the end of life.

The Rise of Palliative Care and Hospice. Despite the temporary derailment of death panels, the hospice and palliative care movement keeps gaining momentum. There were more than 5,800 hospice organizations in 2013 up from 5,000 in 2009 according to industry statistics. These organizations served 1.54 million patients in 2013 up from 1.34 million in 2009. The National Hospital and Palliative Care Organization (NHPCO) estimates that in 2013 a full 1.11 million deaths occurred while under the care of hospice (total deaths in 2013 were 2.6 million implying 42% of deaths occurred in hospice). A rigorous analysis of Medicare claims data for decedents by Dr. Joan Teno found that: “of all Medicare decedents in the year 2001, 18.8% accessed hospice for three or more days. By 2007 the proportion of Medicare decedents accessing three or more days of hospice services had increased to 30.1%”.

The Role of Health Systems. More and more health systems are embracing palliative care and hospice initiatives and embedding them in the chronic care continuum.  Large systems from coast to coast such as North Shore LIJ in New York and Sharp Healthcare in San Diego have developed integrated palliative and hospice care services as part of an integrated continuum of care and as they pursue their journey from volume to value.

Integrating with Plans and Providers. Hospice and palliative care organizations have historically been relatively small-scale, independent, entities often volunteer and faith-based. Indeed, NHPCO data show that 78.7 percent of organizations have 500 or fewer admissions per year. As health plans and providers focus on the continuum of care expect greater interest in partnership and in select cases consolidation of hospice organizations into larger entities. Similarly, managed care organizations operating in the dual eligible, Medicare advantage and Medicaid programs will be seeking partners with hospice and palliative care as managed care for the elderly population continues to grow. For example, in California Senator Hernandez, himself a physician championed legislation SB 1004 requiring managed care plans serving Medi Cal patients to integrate palliative care into their service offerings. However, the Medicare hospice benefit remains the primary source of funding for hospice and palliative care organizations nationally providing 87% of revenue in 2013.

Beyond Just Cancer Care. While the hospice movement was born out of the goal of serving terminally cancer patients, by 2013 those with cancer diagnoses accounted for 36% with dementia at 15% of patients being the second largest and most rapidly growing. Alzheimers and dementia are massive national policy issues worthy of a whole column given the developments in science and technology and the resulting costs that will ensue (a topic for another day).

A Personal Note

My mother died of pancreatic cancer at age 82 seven years ago in Vancouver, BC. When she took ill she received very high tech care (an endoscopic billiary stent) to prevent a rapid demise from jaundice, but her physicians made crystal clear from the outset to my mother and to the family that she had terminal cancer and there was no therapy, treatment, or surgery that would extend her life beyond a few months. She appreciated the honesty, and enjoyed her four months getting all her affairs in order, and saying her goodbyes, while enduring any discomfort with dignity and class. She had four great months at home and a good death supported by my brave and dedicated sister and a remarkable palliative care team of physicians and nurses who helped keep her at home pain free and in control of her own life. She died on a snowy December night in my sister’s arms with the Christmas lights twinkling and Johnny Mathis singing “Chances Are”. It’s what she wanted. We all deserve that chance.