Whether at Home or in Hospice, We Should be Able to Choose to Die with Dignity

September 17, 2013

tree-winterA hospital death means that many patients are virtually tortured during their final days, as desperate attempts are made to prevent the inevitable.

In the 15th century, a book called The Art of Dying was a bestseller. Death was seen not as a failure of medicine, but as an entry into the afterlife. Family and friends gathered around the dying person’s bed to recite prayers and bolster his or her faith and hope.

Six hundred years later, strong religious belief is less common, so the emphasis has shifted to hanging on to life for as long as possible, no matter the expense, and heedless of the pain and indignity to the dying person. The Mercury-News reported that “Seventy percent of healthcare expenditures are spent on the elderly, 80 percent of that in the last month of life—and often for aggressive, life-sustaining care that is futile.” As Katy Butler notes in her new book Knocking on Heaven’s Door: The Path to a Better Way of Death,

About a quarter of Medicare’s $550 billion annual budget pays for medical treatment in the last year of life. Almost a third of Medicare patients have surgery in their last year of life, and nearly one in five in their last month of life.


If all that money were making things better for the dying person, it might have some justification. But evidence suggests that the extreme measures taken in the final months and weeks of life actually worsen quality of life for both patients and caregivers. According to an article in The New Yorker,

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care, had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression.


Having a close-up view of this phenomenon, most doctors say they would decline extreme interventions for themselves if they had irreversible brain damage.

Japanese Buddhist mortician Shinmon Aoki has been washing and coffining corpses for almost fifty years. In his memoir he writes that in the 1960s, most people died at home, and their bodies

looked like dried-up shells, the chrysalis from which the cicada had fled. Along with the economic advances in our country, though, we no longer see these corpses that look like dead trees. The corpses that leave the hospital are all plumped up, both arms blackened painfully by needle marks made at transfusion, some with catheters and tubes still dangling. There’s nothing natural about the way they died, as the image of dried leaves falling in autumn would impart.


Katy Butler wrote poignantly about how her mother died under her own terms by refusing surgeries that were repeatedly urged upon her. Yet when her mother was unconscious, it fell to her daughter to beat back the doctors who were already preparing her for open heart surgery. Not everyone has a feisty daughter to stand up for them; those patients often simply go under the knife.

What can we do, while still strong and healthy, to make sure we won’t spend our final days on earth being brutalized by the worst that modern medicine has to give? An advance directive doesn’t guarantee that your wishes will be respected, but it’s a start, especially if you give it to someone with the backbone to stand up to doctors and hospitals, many of whom are focused on avoiding malpractice suits because they didn’t follow standard procedure, no matter how lacking in common sense standard procedure may be.

Many patients are reluctant to make the move to a hospice facility, believing that it may hasten death. But certain kinds of patients live longer in hospice than in the hospital, which is not surprising. The hospice is not only more humane and caring—it often has better food and does not subject patients to lights going on and off all night long.

Palliative care differs slightly from hospice in that it begins with a life-threatening diagnosis, and not when death is in sight. The emphasis is on “caring, not curing,” and encompasses emotional and spiritual concerns, the needs of the family, and practical help in navigating the healthcare system.

Seventy percent of Americans say they would prefer to die at home, but in fact 70% die in a hospital or other institution, while only 25% die at home. If there are sufficient resources, dying at home all but ensures that no extreme measures will be taken against your will. Most hospice patients die not at a hospice facility but at home, with frequent visits from the hospice staff to help family members give good care to their loved ones.

If we want to die with dignity, we should make our wishes known in advance, and if possible in a legal document. It might also be a good idea to append this article to the document, to clarify what we are looking for.

30 responses to “Whether at Home or in Hospice, We Should be Able to Choose to Die with Dignity”

  1. BEN DUGGER says:

    Please give us plenty of pain medicines to die as comfortable as possible.

  2. karl clark says:

    They just don’t care what happens to anyone but themselves.

  3. Melissa Weaver says:

    Let people die with dignity – allow the people the right to choose how they die – NOT the government’s choice!

  4. It boils down to money, which seems to be the trend in almost everything in this country of late. American medicine is a leader in that arena. Why let someone go home and die in peoce if you can make a bundle off expensive opperations and drugs and who knows what else. After all they are in business to make money. I Won’t even go to a doctor anymore (last visit 22 years ago) They cant tell what causes anything or what I can do about in lifestyle or diet all they seem to be trained to do is sell me a pill. I do research and a little experimenting with herbs, suppliments and dietary changes and I have had a 95%-100% cure rate without poisoning my self with poisonous drugs.( arthritis, carpal tunnel syndrom , pink eye,high blood pressure , menopause etc. and I havent even had a cold in I can’t remember when and the flue in over 50 years(environment not germs) I will die at home quietly someday, I will not seek help from a dr. I am 64 pretty healthy and not affraid to die.

  5. Audrey Toll says:

    I think there should be a monument to Dr.Kevorkian. What a brave, kind and caring man. As an individual you have a RIGHT to choose to live or die.
    When my dogs became so ill I took them to a Vet and put them down. We are kinder to animals than to humans.
    I do blame this inhuman treatment to religion.

  6. Arlene Baker says:

    My father-in-law died about 6 years ago at home with hospice care and his family all around him the last few days. It was the most beautiful and dignified death I can imagine. Hospitals and nursing homes are terrible places to die. I fervently hope that when my time comes, I can die at home, as well. I definitely don’t want extreme measures taken to prolong my life, for my sake AND my family’s sake. The cause of death cannot always be controlled, but everyone should have control over the manner of their death. There is no more personal, intimate choice to be made in life than how to die.

  7. William Rollins says:

    As a person diagnosed with Secondary Progressive MS, I believe I have the right to determine when the quality of my own life has dropped to a point when I no longer have something to offer my family – and simply have become a burden. I have watched the documentary “How to Die in OR.” and believe this is somerhing that all States should pass such a measure to allow individuals the right to die with dignity.

    • Donna Marquart says:

      I’ve also seen the movie How to Die in Oregon. What an inspiration. Some years ago, a coworker’s father in law was dying – he’d been a heavy drinker and really just wanted to die, but . . . the doctors in the hospital kept him alive for over 3 days – trying to revive him. It was a very big expense for the family.
      What a waste.

  8. patricia schiewe says:

    With Obama care I hope that things like fixing the heart of a patient who has a non functioning brain will be considered unwise. The goal of medicine needs to be a happy, healthy quality of life and now it is the prevention of death. This is totally crazy and mostly profit driven and also the extreme fear of death is fostered by some religions as is the extreme fear of hell and damnation. It
    Death is a natural and normal and much needed part of life.

  9. I do have an advanced directive. I just hope it is used when it is my time to leave this world.

  10. Luvenia Vaughan says:

    Since we can’t live with dignity it would be nice to be able to die with it.

  11. Joyce says:

    I also believe we should all tell our families what to do in any of these circumstances of Death or illness. I have my Living Will made out and both children of mine agree with my intentions of what I wish. Even though I am a organ DONOR .

  12. Naomi says:

    It appears that you have joined the death with dignity movement (euthanasia) and are not in favor of the elderly receiving medical care which certainly goes along with Obamacare. I’ve seen elderly patients denied simple antibiotics for pneumonia and forced to die. I won’t be passing this e-mail on to my contacts for that reason.

    • Gail Fitches says:

      I totally agree with you. I made comments above, and that is how this article struck me also. My Father was one who needed IV antibiotics for the infection he got caused by a doctor. I had to have him transported to another, but it took 2 1/2 days, and almost getting arrested to get my father out of the Death Hospital. I am with you all the way.

    • drs says:

      No, you’re confusing be right to refuse further treatment to being forced to go without treatment. Unfortunately, a lot of propaganda was spread by the right wing’s disinformation brigades claiming that Obamcare has “death panels”. The reality is that it allows people who don’t want to get sucked into the medical miasma to draw up plans about how they want to be cared for at the end. If you look at the law, it says “end of life planning”, but the right (who initially wrote the law few years ago BTW) got some psychotic person to twist the words into threatening scary things to drum up opposition to it.
      Don’t believe all the propaganda on Fox and the other idealogical “news” sources.

    • Francesca says:

      You are reading far too much into this as your snide and irrelevant comment on the ACA shows. What we are opposed to is needless and EXPENSIVE medical care for the dying. Nothing was said or suggested about depriving an elderly person of food or water, or simple palliative medical care. What is really needed is assistance with helping the dying person accept death and not fear it. It is inevitable for all of us and what I hear from so many here is that THEY are having trouble letting elderly relatives go. If you really want to help an elderly relative, spend some time them and give the gift medicine cannot at any price: the gift of comfort and human caring as they leave this life. That will also make it easier to let go and let Nature take its course.

  13. Debbie Groves says:

    I lost my mother to cancer. It was only her choice to enter hospice and she died at home. I believe hospice, which I choose to call “hostice,” as in “hostile,” leads to a very rapid, premature death. In short, I despise hospice/hostice. No nutrition or particular care was offered my mother, and in fact, the opposite. Her hostile, uncaring hospice/hostice physician almost overdosed her into death with the very first medicine he gave her. Thank God for my medical knowledge: when I saw the dosage recommended, I cut her dosage in fourths, and even at 1/4 the recommended dosage, my poor mother was out for 19 hours straight without food or water. She couldn’t be roused. Imagine if I had followed the hostile doctor’s total prescription–my mother would have died immediately. Her hospice/hostice nurses were shocked at her reaction to the medicine–unlike me, they had blindly, foolishly put their trust in the M.D. As it was, my mother and we got to be together for 3 more weeks (I took her completely off the doctor’s medicine after that first, disastrous dosage and told him why. He had nothing to say.). I do not like hospice and think it’s an easy, convenient way to kill off someone whose family can’t be bothered to continue caring for them. No hospice/hostice for me!!!

  14. Elizabeth Csicsery-Ronay says:

    Yes, people should be able to die with dignity. When death is inevitable, there is no earthly reason to continue the suffering. After all, we euthanize animals when there is no hope. Of course, this goes into a swampy area so far as people are concerned, but at least let them go when it is their time.

  15. Patricia Stuut says:

    The longer those bodies are forced to cling to life, the more money the hospice staff and management continues to stuff into their respective pockets. “21st Century values.” I think that pretty well covers the topic.

  16. tina tine' says:

    the decisions regarding the end of life are far too personal to be made by anyone but the individual.

  17. Helga Lukcevic says:

    I work for a Hospice company and reading your article confirms the Hospice philosophy. Thanks so much for getting the word out to the public.

  18. denise says:

    So much for the Hippocratic Oath of ‘primum non nocere’ – First, Do No Harm…I was smart and paid a lawyer to draw up all the necessary funerial, health proxy, and DNR papers when my mother turned 70. She got a diagnosis of pancreatic cancer 3 years later and I was so glad to have taken care of her end of life wishes, so she would not needlessly suffer at the hands of doctors who refuse to let a patient die when it is her time. Hospice staff were wonderful and visited my mother at home until she could no longer live independently. We took her to a nursing home of her choice, where hospice continued to visit until she passed, quietly and comfortably in a caring setting. Wouldn’t have done it any other way.

  19. Martin says:

    I agree 100%…I have a living will and I am a member of Exit International. I want some control on how , when and where I die…and hooked up to monitors and machines in a sterile hospital room while the hospital and Big Pharma Bankrupt my family for useless care / treatments is NOT an option for me.

    • Gail Fitches says:

      My Father and I made him “A Will To Live.” Both of my parents did not like the Living Will, so I made my Father a “Will To Live.”
      Utah Special Power of Attorney and Will to Live
      I, ____________________________________, of _____________, this _____ day of _ __, __2013_, being of sound mind, willfully and voluntarily appoint ________________, of ______________ as my agent and attorney-in-fact, without substitution, with lawful authority to execute a directive on my behalf under Section 75-2-1105, governing the care and treatment to be administered to or withheld from me at any time after I incur an injury, disease, or illness which renders me unable to give current directions to attending physicians and other providers of medical services.
      I have carefully selected my above-named agent with confidence in the belief that this person’s familiarity with my desires, beliefs, and attitudes will result in directions to attending physicians and providers of medical services which would probably be the same as I would give if able to do so.
      This power of attorney shall be and remain in effect from the time my attending physician certifies that I have incurred a physical or mental condition rendering me unable to give current directions to attending physicians and other providers of medical services as to my care and treatment.
      I request and direct that all medical treatment and care, be provided to me to preserve my life without discrimination based on my age or physical or mental disability or the “quality” of my life. I request and direct to be given life support, cardiopulmonary resuscitation (CPR), and all life saving measures to sustain my life. I reject any action or omission that could cause or hasten my death. I direct all medical care to the full extent necessary to correct, reverse, or alleviate life-threatening or health impairing conditions or complications arising from those conditions. I direct my health care provider(s) and health care agent to provide me with food and fluids, orally, intravenously, by tube, or by other means to the full extent necessary both to preserve my life and to assure me the optimal health.
      I intend this document to serve as a durable power of attorney under Utah Code Ann. Sec. 75-5-501. Finally, since I intend these paragraphs of this document to serve as clear and convincing evidence of my wishes, I also rely for the validity of myself here stating my specific and binding instruction to…

      • Gail Fitches says:

        (The rest of the Will To Live) my agent on my constitutional right not to be involuntarily deprived of life without due process of law and on my constitutionally protected liberty interest to direct the course of my medical treatment.
        I direct my health care provider(s) to follow the policy above, even if I am judged to be incompetent. I direct that Gail LAST NAME (Daughter), Mark LAST NAME (Son), and Jared LAST NAME(Grandson) have access to receive “ALL” of the information, medical documentation, including but not limited to all test results and copies of X-Rays, MRI’s, etc., electronic or paper copies at ALL Medical Facilities that treat me.
        _________________________________
        Signature of Principal
        State of ______________
        County of ____________
        On the ________ day of ________, ________, personally appeared before me _____________, who duly acknowledged to me that he has read and fully understands the foregoing power of attorney, executed the same of his own volition and for the purposes set forth, and that he was acting under no constraint or undue influence whatsoever.
        ____________________________________
        Notary Public
        My commission expires:
        Residing at: __________________________
        ____________________________________

  20. james calfee says:

    Yes, right to choose. Sorry, I did not see a call to action. Even if it is not automated, please always provide a call to action first in the article preferably with clear directions. I’ll do it!

    • Gail Fitches says:

      I had an opposite case. I have almost been arrested with each parent. I have lived a nightmare from hell for not getting the treatment to save both parents. Thank heavens my boyfriend was an attorney, that helped both times. He has since passed away, but he helped me to get my Father transporated to a good hospital. My Father almost died 7 years ago, and is still alive, because I fought for him to get good medical care. I know the damage was worse, because of the treatment my Father received at the initial hospital, that I bagged the paramedics NOT to take him to. Everyone calls it the Death Hospital. So, I really do not care for this particular article, because it is the opposite in most cases.

    • Louise says:

      Yes, we should have the right to choose, that must always include the right to WANT to LIVE…that side seems to be forgotten in the discussion. It’s always about death!

  21. Wendy Swanson says:

    I totally believe that every person has the right to decide if he wants to be kept alive at any cost, or die with dignity. I have a chronic very painful condition which will eventually take my life. When the pain gets to be too much, I have no intention of staying around to satisfy anyone. If you’ve never had severe constant pain that doesn’t respond to medication, you have no idea what it is like. I pray no one will get in my way when I decide it is time.

  22. Ann Shirley says:

    I really enjoyed reading this post. As I am still in the beginning stages of choosing nursing homes for my parents I don’t like to think of them as dying there. However, I remember seeing my grandparents receive hospice care and I know that my parents may be the same way in the future. I definitely want them to die with dignity no matter which care plan they receive. I do agree that hospice is more personal and would allow my parents to die at home which I know they would prefer over dying in a hospital. I am looking into NJ Senior Care. I’m not sure if they offer hospice care exactly, but they do offer visiting angels which can be live-in caregivers so I’m thinking that’s probably about the same thing. They seem to genuinely care for their patients and if my parents got really sick I trust that they would allow my parents the ability to die at home with dignity.

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