How Americans die has fundamentally changed with advances in medical technology and the ways diseases are treated. For centuries, death commonly occurred in one’s home with care provided by relatives and community members. Yet since the 1960s, the hospital and intensive care unit have become places of passage as people approach the end.
In this week’s New England Journal of Medicine, we report that home has become the most common place of death among Americans dying of natural causes for the first time since the early 20th century, while deaths in hospitals and nursing facilities have declined. Our analysis of data from the Centers for Disease Control and Prevention and the National Center for Health Statistics also showed striking differences in place of death according to who you are and what you die of: individuals who are nonwhite or those dying from diseases other than cancer are less likely to die at home than those who are white or those who die from cancer.
These findings are encouraging. But they can also have a dark side, illustrated by Margaret Peterson, who helped her husband, Dwight, die at home in Illinois. “My experience was positive in the sense that my husband succeeded in dying in his own damn bed, in his own damn house,” she wrote in response to a query that one of us (H.J.W.) posted on a Facebook group for caregivers. “It was negative in the sense that the medical management we needed, such as subcutaneous or intravenous morphine, was not available. It was terrible.”
The emergence of hospice
Concerned by the inadequacy of care provided to the dying, Cicely Saunders founded the modern hospice movement in England in 1967. The growth of hospice in the United States was likewise fueled by growing disillusionment with the aggressive treatment that cancer patients received even when death was approaching.
Hospice is specialized interdisciplinary care for those with limited life expectancies. It focuses on managing symptoms and maintaining quality of life. It differs from palliative care, which may be administered at any stage of serious illness and in conjunction with conventional treatment.
In the United Kingdom and Europe, hospice is predominately an inpatient service; in the United States, home care is prioritized. End-of-life care in the U.S. was revolutionized by the Medicare hospice benefit, which became permanent in 1986.
Hospice has since been transformed from a social movement into an essential component of the health care system. The rise in home deaths documented in our study is likely a result of greater use of hospice along with broader efforts to de-medicalize and improve end-of life care.
Hospice in the U.S. is a uniquely American creation: an insurance benefit intended to make hospice a cost-neutral service. It was designed based on the needs of people with cancer, a disease that progresses differently from other common causes of death such as heart failure or dementia. It was also created with the expectation that family members would provide the majority of hands-on care.
Hospice does not provide 24-hour care in the home except in short crisis situations. Symptom flare-ups, like a spike in pain or difficulty breathing, may be challenging to manage at home and the day-to-day burdens on caregivers are often significant.
Inpatient hospice facilities, which are able to provide intensive symptom management, are at increased risk of closure due to insufficient funding and strict Medicare regulations.
Improving the system
We are advocates for hospice and are encouraged by the expansion and uptake of this service. But many individuals need the kind of care that the current hospice model cannot provide. Given the rising number of people dying at home, ensuring the availability of services to support them and their caregivers is a matter of urgency.
Only about half of Americans die while receiving hospice services, and home-based non-hospice palliative care is still in its infancy. We need a new movement, one that embraces the best of what hospice pioneers envisioned but that also adapts to the reality of modern health care and society.
Upgrade hospice. By agreeing to cease potentially “curative” care, patients who choose hospice are expected to have reduced expenditures from expensive treatments and hospitalizations. This model of care was unfair from the start, but it is now terribly outdated as the line between “curative” and symptom-easing treatments has become increasingly blurred with the development of new medical technologies. Hospice should be redesigned with quality of care as its priority, not the cost of care. Eligibility criteria for hospice should be based on a patient’s needs, not inaccurate estimations of prognosis or the treatments she or he is willing to forgo.
Change the one-sized fits all approach. Current policies present barriers to wider hospice use for people with non-malignant condition, who may benefit from disease-directed therapies late in their disease course and whose prognosis is less predictable. Racial minorities have lower rates of hospice use, likely due to greater mistrust of the health care system, cultural beliefs and preferences, and greater desire for life-sustaining care regardless of prognosis. The ability to receive disease-directed treatment should be incorporated into new models of hospice care and the viability of disease-specific hospice benefits should be explored.
As our population becomes increasingly diverse, the need for care that incorporates varying cultural backgrounds and preferences will also grow. Geographic disparities and workforce shortages have fueled innovative telehealth hospice programs. We will need other inspired programs to extend high-quality person-centered care to all.
Pay attention to social determinants of health. People with fewer socioeconomic resources are less likely to die at home — presumably because they lack the ability to afford and access services that make dying at home feasible. Paying for private caregivers is beyond the ability of most Americans and the current hospice benefit provides coverage only for limited social services. Many hospices, however, report using internal funds to assist patients with non-reimbursable needs such as food, shelter, and utilities. We must think outside the box and develop programs that meet social needs at the end of life and consider incorporating additional social supports into new care models.
Make quality end-of-life care available in all settings. When asked, most people say they would prefer to die at home, and hospice use increases the likelihood of this occurring. Yet a home death is neither preferable nor possible for everyone. It is good when preferences can be honored and people are able die in the place of their choosing. Yet the reality of serious illness and the capability for caregiving are complicated. Every individual is different, as are their needs and preferences. Indeed, both may change over time. Everyone, regardless of the setting in which they receive end-of-life care, should have access to high-quality symptom management and psychosocial support at the end of life.
Hospice allows many people to experience what some refer to as a “good death” in their homes. The goal of our health system should be to ensure that all Americans have the ability to choose such an opportunity.
One such person was Mary who, in her late 90s, realized she was dying. Her daughter-in-law Nancy described her final moments. “She died on April 24, peacefully and painlessly, about an hour after her hospice aide, Marie, had given her a loving bed bath and shampoo, changed her sheets, and massaged her feet and hands with oil,” Mary wrote to us in an email.
“Mary held out her hand to Marie and said ‘Thank you,’ snuggled down into her bed, and about an hour later was gone.”
Sarah H. Cross, M.P.H., is a doctoral candidate in the Sanford School of Public Policy at Duke University in Durham, N.C., and a former hospice and palliative care social worker. Haider J. Warraich, M.D., is the associate director of the heart failure program at the VA Boston Healthcare System, a cardiologist at Brigham and Women’s Hospital, and an instructor in cardiology at Harvard Medical School.
I believe the best place is where one is surrounded by loved ones in the home or hospice.
People need more education concerning Hospice patients. First of all its for terminally ill people with less than 6 months to live. Actually, some people graduate from Hospice. Pts can go to the hospital if they wish, but realistically most care can be done at home by hospice. Some people are actually tired of going to hospitals and ERs. Many pts would rather be home with their families. Hospice does not hold food or liquids. During the dying process the pt has no appetite and will go for days or weeks with little or no food.Also, as a patient declines they are unable to swallow and not able to even sip drinks. That’s the bodies natural way of shutting down. Some families think if they can just get their loved one to eat or drink, they will feel better. That’s not the case when the patient is nearing the final stages of the dying process. To say and insinuate that we prey on vulnerable sick people is absurd. People deserve to have the best quality of life with their loved ones supporting their wishes at home. Death can be painful and they deserve to die peacefully and with dignity on their own terms. People do better at home with their families. They have many benefits available through hospice e. i. Medications paid, equipment provided, supplies, nursing visits, aide visits, social workers, volunteers, spiritual and availability 24/7 and holidays. Respite provided every 30 days so the caregiver can have quiet time and relax. I am proud to be a Hospice Nurse and find it a privilege to be part of their journey.
My mothe in law passed away with hospice care in our home, my wife holding one hand, me the other. It was the most peaceful solution transition to the next life I can imagine. I just pray my transition is as comfortable as hers was
There MUST be better support for caregivers. I was lucky to have a spouse who could continue working while I cared for our adult daughter. Most people would not be able to do this full time. However, I was not qualified in any way for some of the things I needed to do for her, and I wonder how much that added to her suffering. I am glad she was home, but I know it would be impossible if I was older, and would have been financially ruinous if I was sole support. No one wants to think about money at that time, but it is a huge weight for most. My daughter died August 6 2018, and I miss her every day, feel lucky we could have her home, and recognize I am not a professional level caregiver. Only now feeling a little sane after 24/7 life and death responsibility.
Hospice is the biggest money maker under Medicare. Medicare wants whatever is cost effective and that means getting rid of as many elderly patients as possible. Four years ago, my mother had a hip replacement and our home healthcare wanted to put her on hospice after her treatment. She was able to walk and had no cognitive problems. There was no way she was ready for hospice. Hospice gets paid everyday by Medicare. They usually send out a nurse once a week to check for vitals and that is about it. It is a big money maker.
Last year, my mother had pneumonia and a UTI infection and was not given any antibiotics by the hospital. They did this without saying anything to me and I had not put her on hospice. The hospice doctor came to me without being asked to come. When I told him how upset I was about my mother not being given any antibiotics, he told me that he considered pneumonia an old person’s friend because they just fall asleep and die. He told me my mother would never walk again after her hospital stay so just sign her up for hospice. She was walking within ten days after returning home. If you or a loved one is elderly, the so called medical professionals want to sign you up as quickly as possible.
The other problem I see is that families are not told that they have no say so in what happens to their loved ones. The families still do the hard work of caregiving, but hospice has complete control over what happens to them . If my mother fell and broke her hip again, I don’t even have the right to call an ambulance. Hospice would have to come by and say whether she would be permitted to go to the hospital. What I have seen from hospice is that elderly patients are taken off their meds even when they are not actually dying. They are given morphine until it slows their breathing and they die. This is not end of life caregiving. This is taking the life of someone.
17 hospice workers in Frisco, Texas were indicted for murder for profit. The director of Novice told the hospice nurses to hasten their patients death so that they could make more money. The director wanted the patients dead when Medicare pay outs were about to stop.
Doctors and nurses are very aggressive about signing up your loved one. They have even tried to make me feel guilty about not signing my mother up. They use the term “making them comfortable” which is a euphemism for killing them.
Hospice can be a godsend to families struggling to cope with end of life care of a loved one. It is not perfect, but often better than many alternatives. However, I would note that while currently Medicare requires the patient to forego curative treatment, there is currently a demonstration project in flight which may change that. And there are some commercial plans that do NOT have this requirement. Aetna, for example, changed its policy following their then-CEO Mark Bertolini’s experience with his son more than 10 years ago. The results of that change in policy were massive: an 89% reduction in inpatient bed days and a significant rise in patient satisfaction, along with lower costs.
Hospice is uncomplicated. A service available to the rich and forced on the rest which requires loved ones to euthanize…nah…kill the loved one. I know. I took care of my mother until death. No one can tell me lies.
I’m going to die at this desk…..
So, did Mary write the email just before she died or after? Structure not clear. And was she given fentanyl to hasten her “painless” death?
As we write in the article, Mary’s daughter-in-law sent us the email after Mary’s death: “Her daughter-in-law Nancy described her final moments.” She took no medications, nor were any given, to hasten her death.
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