Too Little, Too Late
Hospice end-of-life care is paid for in the United States for six months. This care is the most generous benefit of the abysmal government-provided healthcare in the wealthiest country in the world. At least we can support our dying in the last days of life. But the sad fact is that few patients take full or even half advantage of this most important benefit. More importantly, as a result, most patients severely limit the days at the end of their life when they are comfortable and can spend quality time with their loved ones. People who die soon after stopping aggressive treatments likely do not have a great end-of-life experience, given that many therapies, especially cancer treatments, are devastating to the patient. The attitude that one should fight to the end no matter the cost and try as many treatments as possible, without genuine regard for the odds of recovery, contributes to this. Changing this will take brave doctors willing to advise patients of hospice end-of-life care earlier in their terminal disease process. It also takes patients who can advocate for quality of life based health decisions.
The median time on a hospice service in the United States is 18 days, barely three weeks. This means that half of all hospice patients die within 18 days. Remember that this means some will die in 7 days, some in 16, and some in just one or two days. I have had my share of patients who died before I could visit them a second time.
Eighteen days or less is far from the 180 days they are allowed and even disturbingly short of the 90 days they could have if the death distribution more closely matched the 180-day service allowance (assuming a normal distribution centered above 90). Think about that. That is 72 days that patients could have had to visit with loved ones, reflect, make peace, and prepare for the next life.
Furthermore, shy of one-third of hospice patients die within a week, with 25% expiring in five days or less. 10% stoop breathing within two days. If you stop and think about it, those are astonishing numbers. One-third of hospice patients use less than four percent of their hospice benefit; that benefit is time with family, planning for one's death, and being relatively comfortable. Furthermore, a week is far too short to derive much benefit from hospice besides sedation.
“The purpose of a doctor or any human in general should not be to simply delay the death of the patient, but to increase the person’s quality of life.”
This Medicaid benefit is probably the most generous of all the health benefits provided by the US government. And yet, most people who use hospice in their final days don't get close to even half the potential benefit. About 12% — 15% of hospice patients live beyond six months, and there is much fretting about these people and the cost they incur. An article in the Journal of Palliative Medicine in 2014 tacitly acknowledged that the goal is to have an even greater percentage of patients die before six months, obviously to save money. To be clear, I don't think we should waste money. Still, I hardly believe that encouraging later access to hospice is humane.
People who come to hospice care late, especially those finishing up months and even years of grueling cancer treatments, are likely not spending their last days enjoying the soothing effects of palliative care, able to spend quality time with their loved ones. They are too sick from the chemo and radiation to be able to recover from those treatments enough to have much quality of life. I have seen this countless times with patients with whom I only get one or two visits. There is ample evidence that, for these patients, the treatments have shortened their lives and resulted in a poor end-of-life experience for them and their families.
On the other hand, patients I have met who have stopped treatment at least four to six weeks before death can enjoy some time with enough energy and clear-headedness to comfortably engage with people and with life one last time before they turn inward during the active dying process. This is a massive gain for patients and families. I can not emphasize enough the difference that I see. Patients who come to hospice late, just after a last-ditch chemo effort, are exhausted and unable to engage much before they start to actively die. Those who spend more time in hospice care can interact with loved ones and prepare for death.
“Under Medicare right now, I get paid to put a pacemaker in you, but I don’t get paid to counsel you about end-of-life care.
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Patients spending months in hospice care is what Cicely Saunders had in mind when she started hospice and is the thing she proselytized when she talked about her work. In her talks about her work, one of the most compelling items that Saunders used were photographs of hospice patients. These were photographic pairs of the patients when they started hospice and after a couple of months of care. The striking thing was that talk attendees were almost always confused about which picture was before and which was after. They often got it wrong. The patients looked remarkably better after a couple of months in hospice care. Saunders and others attribute this to the holistic care — for physical, emotional, social, and spiritual needs — provided by hospice and the cessation of devastating treatments.
Why do people come to hospice care late in their terminal disease process? Perhaps the most apparent reason is fighting the disease till the patient can not take any more, and there is nothing more to do that won't outright kill the patient. In modern medicine, there is always something else to try. Doctors fighting disease are often not concerned with quality to quantity of life in their patients as much as they are focused on diagnosing the illness and defeating it with a treatment plan — at any cost. On the other hand, hospice focuses on providing the best quality of life possible in the remaining time.
Some medical doctors are brave enough to say that the medical establishment's aggressive treatment plans don’t do the elderly or terminally ill many favors. In his book At Peace, Samuel Harrington, MD, maintains that the elderly especially need to be suspicious and aggressively disinterested in aggressive and invasive therapies — aggressively passive. He also indicates that because medicine has become a business, especially in the United States, care decisions are often made based on profit and not on the patient's quality of life.
Seamus O'Mahony, MD, in The Way We Die Now, maintains that this medical-treatments-at-all-cost approach is rooted in the modern medicine view that death is the absolute enemy that must be beaten and abolished. Doctors give so much attention to treating all disease states that they often do not think about their patients' quality of life or ability to withstand specific treatments.
Whatever the reasons for short hospice stays, leaving so much life on the table, especially reasonably good quality life, is a mistake — really, a crying shame. Both Harington and O'Mahony quickly point out that cancer treatments only have a minimal improved benefit over the last 50 years and only with certain cancers like breast and prostate. Most people with stage IV cancer die of that cancer, and it is questionable how much quality of life they gain with treatments. Indeed many palliative care experts maintain that aggressive cancer therapies for people in the terminal phase subtract quality days from patients' lives.
“Hospice means end-of-life care. The admission ticket is a diagnosis from a doctor that you have six months or less to live.”
Keep in mind that when you hear about a person who seemingly, miraculously survives a stage IV cancer diagnosis for much longer than initially predicted, these are rare exceptions rather than the rule. Remarkably, these things do occur, but most people with a terminal diagnosis and advanced disease state die of that disease sooner rather than later. Furthermore, these deaths occur despite aggressive treatment until the end of their life, making their end of life pretty miserable.
Changing the medical system's approach to treatments and the elderly and terminally ill is up to a few brave doctors. Samuel Harrington is such a doctor. He describes how he often had end-of-life discussions with patients and refused to do procedures, even diagnostic ones, on patients that he felt would derive no real benefit and put the sick or elderly patient at risk for complications that could lead to a painful decline. Getting to hospice in plenty of time for benefit is primarily up to the patient.
And what about the government drive to limit the percentages of people at the six-month end of the hospice care window? This goal will likely result in a greater share of patients coming to hospice very late in the terminal phase of their illness. A more humane approach and one that would better fulfill the goal of hospice would be to have a plan for a normal distribution with the mean at three months and short tails ending at one day and 180 days. This goal would ensure more people have enough time in hospice to enable a good death. In other words, a death where they have ample time to plan, prepare and spend time with loved ones.
It is also important to note that patients who reach the end of six months and are not imminently going to die are sometimes dropped entirely from the service. Additionally, if a patient rallies — improves dramatically in terms of their outwardly measurable symptoms — the hospice service might drop them. This is despite the fact that some people in hospice care often start looking a lot better after a couple of months of hospice care. They are still dying of their disease. Hospice is not a Lourdes. Few miraculous cures occur. The fact is that people often feel a lot better after stopping devastating treatments like chemo and radiation. It seems that there should be an alternative to dropping patients entirely. Note again that about 12% of patients go beyond the 180 days.
“In the end, it’s not the years in your life that count. It’s the life in your years.”
For now, the government pays for hospice services in the United States for at least six months. Hospice care is one of the best Medicaid benefits available. And yet, these services are vastly underutilized by the terminally ill. This is a shame because the evidence suggests that people who utilize at least a couple of months of hospice care have a much more tolerable death with ample opportunity to spend quality time with friends and loved ones before death. Unfortunately, most hospice patients get too little quality at end-of-life because they opt for hospice too late in their disease cycle.
Harrington, Samuel. (2022). At peace: Choosing a good death after a long life. Hachette Book Group.
Harris, P. S., Stalam, T., Ache, K. A., Harrold, J. E., Craig, T., Teno, J., Smither, E., Dougherty, M., & Casarett, D. (2014). Can hospices predict which patients will die within six months?. Journal of palliative medicine, 17(8), 894–898. https://doi.org/10.1089/jpm.2013.0631
National Hospice and Palliative Care Organization. (2022). NHPCO facts and figures: Hospice care in America.
O'Mahony, S. (2017). The way we die now: The view from medicine's front line. Thomas Dunne Books.
