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.
Patrick Skerrett / STAT
Adapted from The New England Journal of Medicine 2019; 381:2369-2370
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.
A significant detail being overlooked is that dying at home also means being cared for by someone there. Often, it is a family member who steps forward to make it possible for a loved one to die at home and odds are that this person providing the care receives no emotional support or respite and encounters financial difficulties. So, if more people are dying at home, then more people have the role of caregiver.
Teresa,
That’s correct, but note that while in-home hospice has become the location of choice, “home” is wherever the patient lives, which can include a nursing home, for example. Also, while the hospice Medicare benefit require that there be a caregiver living in the (traditional, street address) homes for safety purposes, it also provides for respite care for the caregiver on a monthly basis.
This means that the hospice company will move the patient to a facility for a short period, usually five days, to provide caregiver relief. Hospice also provides medical equipment such as wheelchairs, beds, pads, etc.
Exactly. Might be a BIG reason for fewer minorities participating. You have to be able to leave work. Most people can’t do that. Not to mention the physical strength it takes to care for an adult. All on little to no sleep and deep grief from watching your loved one die.
Another attempt of the collusion of corporate healthcare and the state to cut costs by conning the people into inviting euthanasia into the American home. Beware the happy face these “compassionate” ghouls put on The Grim Reaper. My mother was starved to death in a hospice for daring to have Alzheimer’s. She was fully aware, conversational and able to eat and walk and on zero life support until “hospice” began administering morphine to a 90 lb 88 year old to give the impression of incapacity. Providing mother care was inconvenient to her power of attorney (which was stolen from the rightful party) and her healthcare costs were draining the inheritance money of those who put her to death. The evil state of North Carolina listed the cause of death as “Alzheimer’s Disease” when in FACT they knew she was denied hydration and nutrition unto death. My mother is all of us if we don’t fight back against the culture of death. The Terry Schivo case at The Supreme Court effectively gave anyone with Power of Attorney no matter their motive the power to kill.
Do you think your mother would have wanted to live in those circumstances had she been able to give advance directives several years previously? I and most others would not, and we would not want government confiscating our assets. Withholding food and water and giving plenty of opiates is the easy way to go. There is no pain or suffering with starvation, as people on extreme diets have learned. The hunger and thirst go away. I could only hope to be so lucky to have such an easy death in my 80’s
I could not agree more and the situation with my mother was very similar. Hospice is legalized euthanasia.
Hospice does not stop feeding people. People are allowed to eat if they would like. If they do not wish to eat, they are not forced. It is allowing the natural process to take place.
I am sorry about the loss of your mother. May you find peace.
It still weighs on my heart that my ex boyfriend’s Dad did not want hospice, but even more didn’t want to die anywhere but his own bed.
But Bf’s Mother who had control over his Dad’s care overruled him and with the help of a couple very bad Doctors was able to deny the poor man care for pneumonia and send him a lonely hospice to die.
As poorly as I view hospice at least it’s good if people can die at home and not ina cold and sterile setting.
Chauncy,
A loved one dying is a difficult and emotional time and I sympathize. A couple of points, if I may. Hospice does not work to extend or end life. The goal is to make the patient comfortable while the dying process is taking place. In terms of “goulishness,” there is no financial incentive to hasten death; in fact, just the opposite. Hospice companies are paid by Medicare (not the patient) for the number of days help was provided.
What’s hard for most people to understand is that the shutting down of food and water intake is a natural part of the dying process. There are some excellent books about hospice; perhaps you could explore a few to understand a little better what happened with her and bring yourself some peace of mind.
As an ICU nurse, I can tell you: the hospital is the last place you want to die. It’s a terrible, lonely, impersonal, and expensive place to die. You are a job, not a loved one. This will sound callous but take it from someone who’s seen hundreds of people die. Average lifespan is 79 in the US. So if you’re over 80 you’ve lived a full life, literally. So if you experience a serious injury or illness. Consider hospice. This may be a good opportunity to die. Yes, a good opportunity. Go to the hospital with a heart attack at 85 and you just might die two weeks later attached to a dozen life-extending machines after spending your family fortune, or perhaps worse, you could get your heart fixed and die with Alzheimer’s or severe dementia after 10 years wandering a nursing home. Best solution is to not go into the hospital after 80. Sometimes it takes watching dozens and dozens of deaths to know what constitutes a good death and bad death. The hospital is no place to die, and modern medicine can’t fix old age. Inconvenient truths but truths nonetheless. I say this to help you and your family. Fight against these truths and you and your family will suffer unnecessarily because of your cowardice and denial.
Truth.
Pneumococcus used to be called the old man’s friend. There are far worse deaths.
Sounds like a good thing, who wants to end their days in the hands of the medical industrial complex if it can be avoided.
my father was put into hospice after a five year battle with colon cancer that sped to ; well just about everywhere. this was 13 years ago, and the chemo he was given to help him before entering hospice was barbaric and he was not good while taking it. when he entered into the hospice program he was offered hospital or home care hospice options. He choose home where he was more comfortable and happy (if that was possible) Dad lasted a little over a week and was attended to most of the time by a hospice volunteer, and the rest of time a family member. Dad was given adequate pain meds and at the end he did not respond unless he initiated the conversation . I honestly know this was correct treatment as we the family spent all our time with him and although being sick with pre-grief, we the family did all say what each needed to be said between humans at the end of life. God rest his soul. Dad we loved you then and love you now
“Gk. EU: ‘good,'” “Gk. THANASIA: death.'” Who’s kidding whom? My wife has worked in skilled nursing for nearly 20 years and seen in service to elders how hospice nurses move in and emotionally manipulate unwilling families to make their loved ones ‘comfortable,’ i.e., the codeword for beginning the morphine to suppress their appetites, make them docile and compliant, withhold nutrition and then slowly starve them to death. Hospice is no different from the rest of the American medical culture whose underlying purpose for the aged is to shuffle them off to Buffalo in the sky. Deny all they like, it’s a culture of death no different from the assassination of tens of millions of ‘unwanted’ children, an utterly ghastly business.
Thank God for people like you who really know how insidious the hospice culture is.
If my sister and I were not as attentive and loved our mother as much as we do these bastards would have talked us into hospice 7 years before she died. It has been 11 years this December 26 and my anger and bitterness only grow.
I have fear of what will come for seniors, especially those who do not have a caring family. A bad cold could fall prey to these ghouls. I’m only half sarcastic about that.
The last ten years of my 40 year nursing career were spend working for a hospice outside Boston which now has two hospice houses and a large service area. I loved hospice nursing and love hospice as a health care model. I agree with the enhancements you suggest and expect the NHPCO does as well. My 28 year old son died on hospice in 2012 of colon cancer and though I was a nurse, I needed to be a mom. His course of illness was very short, only 84 days from diagnosis to death, so it was very stress filled and full of sudden changes. When it was clear he was obstructed, he declined home TPN and we had a week at home and a week at the Kaplan Family Hospice House in Danvers.
I hope we can find ways to open the conversation about end of life so people understand their options. I am so grateful to have had my 10 years and our wonderful experience with my son’s peaceful death.
In the market driven healthcare . All area want their share from insurance so pt are not referred early enough in their search for a good death. As a nurse I have seen it time and again.
This article is inaccurate. My mother received 24 hr round the clock care for Hospice. Also, my mother was insured by the then General Electric Long Term Care policy. I know because I was the writing agent for GE LTC for her, I bought and paid it for her. Our Hospice care was wonderful and my mother was so thankful and joyful to be able to leave “swing bed” at her local hospital and return home to succumb…