By Michael Connelly
We have known for decades that the way most elderly patients die in the United States is a travesty. Instead of dying at home with family and friends, most patients die publicly in an institution. Over the years, numerous studies have been published recommending changes to our approach to death for the elderly. The Institute of Medicine (IOM) has done the most substantive reflections on the topic, the most recent being a 650-page tome entitled Dying In America in 2015. Numerous books have been written on this subject, perhaps the most famous by the Harvard Surgeon Atual Gwande, entitled Being Mortal 2010. Numerous contemporary articles have been written on it. There have been movies, plays, and television shows depicting our irrational approach to preventing the elderly from dying.
Despite all these criticisms and concerns, little has changed in how healthcare approaches death for the elderly. The most recent complaint came from none other than Lancet, the prominent international medical journal. It produced, in 2022, a Commission Report calling for the medical community to return the death and dying of the elderly to the family. It went so far as to say that medicine has hijacked death and dying inappropriately. So why does nothing change?
I have spent the last five years studying that question. My conclusion is that the reasons stem from two forces: (1) the design of the healthcare delivery system and (2) everyone's natural fear of their death. Unfortunately, our fear of death has created a health system of services that poorly serves the needs of the elderly. That design includes our clinical care models, legal regulations, economic incentives, insurance benefits, and psychological fears. The net result of these social forces is that our health system is designed to keep older people alive at all costs. In old age, that may not be a good strategy.
Let's look at the choices made in these four sectors, starting with clinical. Physicians are trained to save lives. Death to them is a failure. Consequently, they do not like to talk with patients about dying. Not only is death a failure for them, but it is also not a topic they are not trained to discuss. It is only human to want to avoid telling someone they're dying. It is also natural that individuals do not want to hear they are passing. Yet all the wonders of medical science cannot stop us from dying - it can only delay it. Our society does not seem to appreciate that this delay can be excruciating.
One issue that further complicates dying is that timing is difficult to predict. This makes it easy for everyone to avoid dying conversations. So why would a doctor want to discuss such a painful and unpredictable event with you?
Some would even argue that discussing death with patients deprives patients of hope. So, physicians understandably prefer to focus the conversation on what they can do to cure you. Finally, there is the penumbra of malpractice suits surrounding clinical advice. A physician can be sued for not treating you. Or they can offer you treatment options, avoid a malpractice claim, and be paid for it. So don't expect your physician to help you decide when you have had enough medical care - that is not their job in today's health system.
Next, we will look at how regulations and the law impact EOL care. Hospice is perhaps your best option for end-of-life care. Yet our health system is designed to discourage the use of hospice. Let’s look at some of the hospice regulations. One regulation requires that a physician certify the patient will die in six months before the patient qualifies for hospice. This regulation is unjust and unnecessary. It is unfair because no physician wants to declare their patient will die in six months. It is superfluous because hospice is a superior care option at the end of life, regardless of the time it takes for the patient to die. Not to mention the fact that the accuracy of these predictions is unreliable. The consequence of this regulation is that patients are not referred to hospice until the last weeks of life - the patient, in effect, misses the opportunity to spend the last several months of their life in comfort care with their family.
The second hospice regulation hurting EOL care is that patients must give up their Medicare insurance to be eligible for the hospice benefit. Now patients are free to return to Medicare coverage if they wish, but the idea of giving up their Medicare coverage is a natural barrier. Any care a patient may seek, like an ER visit or a treatment option, is not covered by the Hospice benefit.
The third hospice regulation is that the patient must give up the physician caring for them. Hospice only allows the hospice physician to care for the patient.
Admittedly, there is a logic for all these regulations. That said, the reason is flawed. It makes no sense that dying patients have unfettered access to ICU, renal dialysis, open heart surgery, transplants, and feeding tubes but cannot easily access hospice. These tertiary treatments are often ineffective and extremely costly, but compassionate care that is more effective and less expensive has all these regulatory barriers. Many more legal regulations are discouraging the use of EOL care, but they are beyond the scope of this article.
The next and perhaps most potent force preventing access to better EOL care is economic incentives. Economic incentives greatly influence the health system. For example, physicians are not paid to talk with their patients, so they minimize patient conversations. This is not a physician's preference, but it is their economic reality. Physicians are also not paid to talk with each other. Today physicians no longer seem to have the time to speak with one another about the coordination of their daily patient care. This lack of care coordination has created one of healthcare's most significant problems - fragmented healthcare. This lack of communication is particularly harmful to older patients. These patients require more detailed communication. These patients also tend to have multiple physicians due to their chronic illnesses.
The driver of this economic absurdity is the billing and coding system that encourages physicians only to spend time on “codable” care. This system values procedures and tests and devalues conversation. This system only pays for what it can measure. Unfortunately, many essential components of patient care are challenging to measure and quantify. For example, they are just talking to patients about their concerns or end-of-life care options. Suffice it to say, the most significant problem in healthcare today is how we pay physicians. We economically incentivize them to give the wrong care, and the payment process is ridiculously complicated. The complex payment methodology is one of the most expensive elements of health care. Today a billing expert earns more than a physician because few people understand it. The last force driving our society away from good end-of-life care is our fear of death. This fear is innate and powerful. Yet, in old age, the logic of this fear should diminish. But it doesn't. We are all greedy to live longer. The reality is that if we could prepare ourselves to address this fear in old age, it would significantly enhance our quality of life and dramatically lower the cost of healthcare. Asking yourse, “Am I old enough to die?” is a worthy reflection. This is a philosophical question, not a medical question. Yet today, we make this critical life issue a medical question. This author believes that is a severe mistake.
The book The Journey’s End: An Investigation into Death and Dying in Modern America explores these issues deeply. It then provides pragmatic advice and recommendations on how we could implement better end-of-life care in this country. A vital view posed in the book is that death has a bad rap. We need to reflect on the idea that dying may be a much better option than spending the last years of life not knowing who you are or being tortured in an ICU. It also requires some reflection on the thought that you do not control when you die but only how you live.
