Why hospice matters

I recently lost a close family member to cancer. She was old, she had been ill a long time; it still hurts. But in her dying, she made some wise choices. She was a very bright woman, and retained her mental capacities right up until the end. This gave her the opportunity to decide how she would approach death. She chose to enroll in hospice.

Hospice is widely misunderstood, partly because of the way we misunderstand death in the U.S. Instead of an inevitable part of life, death here is seen as an enemy to be fought at all costs, no matter the futility. Intensive care units, which were designed to care for people with a severe but potentially curable illness are full of the incurable—people on ventilators who will never breathe on their own again, who will never have a significant interpersonal interaction again.


Some of this is due to unrealistic expectations of family members, and some is due to physicians either failing to address end of life issues, or wanting to “try just a little bit more”. Either way, a lot of unnecessary suffering occurs near the end of life.

The HIV epidemic brought a revolution in end-of-life care to the U.S. Early in the epidemic, AIDS was universally deadly, and the deaths often happened badly. People would end up in the hospital, surrounded by strangers, with their closest friends unable to visit because of unconventional relationships (i.e. most were gay and their partners were shut out by the system). AIDS patients often died gasping for breath from pneumonia, had ceaseless diarrhea, blindness, and delirium. It was an awful death.

Until folks started reinventing the concept of hospice, initially in networks of volunteers. Patients would stay home, cared for by friends and volunteers, with medications given to ease discomfort.

Today, palliative care and hospice are vigorous specialties. They have become more widely accepted by patients, but misconceptions still exist.

Hospice care is aggressive, but not in the same way as standard medical care. The starting assumption is that a disease is incurable and the patient is going to die of that disease. Since the disease is ultimately going to win, the only battle left is the symptoms. Pain, breathing difficulties, loneliness, grief are all treated aggressively by a multidisciplinary team that usually includes doctors, nurses, clergy, and others.

I’ve been treating my own patients at the end of life for a number of years. Not all internists have the experience for this, but I hate to turn a patient over to a stranger when they need me the most.

I just returned from the bedside of a patient of mine. She took a bad turn a few days ago, and she and her family elected to enroll in hospice rather than engaging in a painful, futile battle on a ventilator. As is common, once she decided on hospice, she perked up a bit and was able to say goodbye to her family. Now she’s lying in bed comfortably. She probably won’t last the day. Her family is pleased that she is comfortable, and while they are appropriately sad, they are satisfied that she is receiving the best treatment possible.

As an internist, it’s actually quite rare to receive thank you notes from patients. You may pull them back from the brink of death, maintain their health, counsel them in times of need, but a card isn’t part of the thanks. Unless someone dies. I have a file full of thank you notes from families whose loved ones I’ve cared for at the end of life.

Dying is an important part of life; it’s an opportunity to help someone remain peaceful and comfortable as an inevitable end approaches. It’s also a time when you can make someone more miserable than they could every have imagined. When a fatal disease is diagnosed, patients and their families need close guidance to assure as much as possible that they follow the path of peace and comfort, rather than pain and fear.

Comments

  1. #1 Faux
    May 5, 2008

    This kind of post really speaks to me, and I’m sure most other people. My grandmother went through many of the “bad” parts of the process, involving lots of time in and out of hospitals for Emphysema and other problems related to being a lifelong smoker, before choosing home-based hospice care at the end.

    Posts like this, and thinking back on politics at the time of her death, I am wondering what your view as a doctor is about the “Death with Dignity” laws passed in Oregon and other states? These laws came about just after her death, but I know that would be one of the things she would have thought about, as her main focus at the end was making sure that she passed as little of a burden “for (her) mistake smoking” (her words) onto her children. I am firmly in the mind that I would rather go on my own terms.

    I am not looking for necessarily a “Love It/Hate It” response as much as what things do these sorts of policies do from a doctor’s standpoint?

    Feel free to moderate this post, as I’m sure it may end up sparking a debate you may not want to have on this blog. I just feel that you have a very level head and obviously think things through when it comes to end of life issues.
    -Chris

  2. #2 PalMD
    May 5, 2008

    Actually, I have some very strong opinions on the topic (surprise!), but I’ll leave the thread open and see where it goes.

  3. #3 JuliaL
    May 5, 2008

    Hospice is widely misunderstood . . . .

    It was certainly misunderstood by me. When my father was dying of Parksinson’s Disease, after months of helping care for him, I was becoming desperate. We were spending all the money we had to spend on providing paid care part of the day, but it just wasn’t enough. My mother was depressed and needing more and more care. All my father wanted was peace, a pleasant atmosphere, and visits with loved ones, but we had passed the point where I was able to provide that atomsphere.

    So I called Hospice for help. I explained how overwhelmed I was, and how much in need of any additional supportive help that could be furnished, absolutely any help of any kind. The Hospice person asked if my father’s doctor had informed him that he had less than six months to live. I was startled and replied that I couldn’t imagine our doctor ever making such a remark to my father. The Hospice person said I should call a particular nursing agency that I already knew was charging four dollars an hour more than we were paying and said Hospice didn’t deal with our sort of case. It felt like the last straw. I hung up the phone and cried.

    And that’s all the help I ever got from Hospice. My father died a few weeks later, in a stressed-out household of exhausted people, not with the peace and quiet he deserved. He loved people and would have been delighted to be visited by a calm, pleasant person to just sit and talk with him for an hour or so. Instead all he got was us. One night I was so tired and depressed I went to bed very early, and didn’t go to say good-night to him for the first time in several years. He died during the night.

    “Hospice” is a nasty word to me. Every time I hear it, I hear the cold voice on the phone saying, “We don’t work with cases like yours. Good luck.”

  4. #4 Liz Ditz
    May 5, 2008

    My father died of metastatic melanoma. He died peacefully at home in the afternoon of September 7, 1991, surrounded by his family and friends.

    I remain deeply grateful to the Hospice of the Wood River Valley, who guided us in his care for the last 10 days of his life. The nurses helped us set up a rota for his care, so that we didn’t be come exhausted, and were there for us to talk about our fears. At one point, one of his physician wanted to put him back in the hospital. The Hospice physician was able to help us keep him out of the hospital.

  5. #5 Orac
    May 5, 2008

    So I called Hospice for help. I explained how overwhelmed I was, and how much in need of any additional supportive help that could be furnished, absolutely any help of any kind. The Hospice person asked if my father’s doctor had informed him that he had less than six months to live. I was startled and replied that I couldn’t imagine our doctor ever making such a remark to my father. The Hospice person said I should call a particular nursing agency that I already knew was charging four dollars an hour more than we were paying and said Hospice didn’t deal with our sort of case. It felt like the last straw. I hung up the phone and cried.

    I’m sorry you had a bad experience. I really am, but I think your anger is misdirected. You yourself correctly identified why your bad experience happened: You didn’t know what a hospice is for when you called one. Of course the hospice told you it didn’t deal with your sort of case; that’s because it doesn’t. The person on the other end of the line did what she could for you. I have no way of knowing if she was curt about it or if that’s just the way you you heard it because of your emotional distress, but it’s not true that the hospice did nothing. It offered a suggestion.

    Hospices care for those near death. There’s a very real reason that hospices require a prognosis from a physician that the person has less than six months to live: So that it doesn’t become a chronic care facility. The level of support that hospices provide to dying patients is very difficult and would be difficult to keep up over the long term. If they offered services to anyone, they would soon be swamped. (As it is, it’s sometimes difficult to get patients into hospice; there are not infrequently waiting lists.) It’s a shame that other sources of help were not available. It’s a shame that nursing homes tend to be so crappy. But don’t blame the hospice for that.

    I would also point out that your father’s doctor shares some blame here. If the doctor had had a more frank end-of-life discussion with your father and his family, and maybe your father would have decided that hospice was for him, assuming that medically it was thought that he probably had less than six months to live. It’s not entirely uncommon for mistakes to be made in estimating remaining life for individual patients. Such predictions are an inexact science at best. Also remember that one of the requirements for going into hospice is that the patient has decided not to pursue life-saving treatment anymore. In other words, the patient has to accept that his condition is terminal and that there isn’t much time left, the better to free his and the hospice’s efforts to concentrating on making the remaining time as comfortable and distress-free as possible. Thus, what it would have taken is a referral from your father’s doctor, with a prognosis of less than six months to live, and your father’s agreement.

    Again, I’m sorry you had such a bad experience, but your anger does indeed appear misplaced.

  6. #6 JuliaL
    May 5, 2008

    Hospices care for those near death.

    My father was near death. There was absolutely no doubt that he was dying. His doctor did not tell him he had a certain number of months to live first, because with Parkinson’s Disease, that is extremely difficult to judge, and secondly, because it seemed pointless to say such things when we were all focused on the hope of a peaceful, even joyful last days of life.

    There’s a very real reason that hospices require a prognosis from a physician that the person has less than six months to live:

    Do they? That’s news to me. I never heard it before. It wasn’t in any of the TV and newspaper reports where I learned of the existence of Hospice. Certainly the woman on the phone never told me that was a requirement. If she had, I would have called the doctor and asked for a written statement I could take to Hospice.

    It’s a shame that other sources of help were not available. It’s a shame that nursing homes tend to be so crappy. But don’t blame the hospice for that.

    I don’t blame them for anything except their utter failure to do what they are advertised to do – provide desperately needed supportive care to a dying man and his family.

    Also remember that one of the requirements for going into hospice is that the patient has decided not to pursue life-saving treatment anymore. In other words, the patient has to accept that his condition is terminal and that there isn’t much time left, the better to free his and the hospice’s efforts to concentrating on making the remaining time as comfortable and distress-free as possible.

    My father knew he was dying and looked forward to it. That’s why he was at home instead of in the hospital. I told the woman on the phone that he was dying.

    Thus, what it would have taken is a referral from your father’s doctor, with a prognosis of less than six months to live, and your father’s agreement.

    Again, this is news to me. The Hospice woman didn’t tell me that. I thought that we weren’t Hospice’s kind of case because we were already providing my father with some level of home health care.

  7. #7 PalMD
    May 5, 2008

    There is, unfortunately, a range of quality in hospices and hospice workers. In the best setting, a phyisician who knows you helps set things up. What a terrible experience for you and your family. If you are ever up to it, it would be good to write the hospice director—they are usually receptive to communication from patients and families.

  8. #8 jen_m
    May 5, 2008

    JuliaL, I’m so sorry that’s how your experience with hospice went. Hospice, whether home hospice or institutional hospice, isn’t respite care, and it isn’t a replacement for home health or hospital nursing care for the very ill, but it is the best place, I think, for end-of-life care. Quality hospice, that is – bad hospice would be disastrous.

    I had a great experience with hospice (in Canada, but I don’t think that has much to do with it) during my father’s death, which was arduous and horrifying, but relatively swift as terminal disease goes. It was such a vast improvement when we were able to get him a bed in a hospice institution, because the nursing staff there was just so much better at end-of-life care than the staff at the hospital. Not that the hospital nurses weren’t absolutely marvelous at health-improving and life-saving interventions – but when he’d been transferred to palliative care, they were still arguing with us about what “as-needed” meant, in terms of pain medication. When he was clearly not getting relief at the maximum dose of his meds, they wouldn’t call the docs mid-day for a med change, because “we don’t call the doctor just for pain” – well, if not for the patient’s insufficiently controlled pain, then when exactly do you call palliative care? (When the family asks to talk to the palliative care team, it turns out – and I felt like I was ratting out my nurses.)

    The hospice nurses “got it.” He was there for under twelve hours, but he was relaxed and painless. It was great for him, which made it bearable for us.

  9. #9 Orac
    May 5, 2008

    Again, this is news to me. The Hospice woman didn’t tell me that. I thought that we weren’t Hospice’s kind of case because we were already providing my father with some level of home health care.

    I also neglected to mention that a large amount of hospice care is home-based, to allow patients to spend their last days at home. Home hospice is a wonderful thing when appropriate. However, some patients require too much care to be able to stay at home.

    Again, I’m sorry that you had a bad experience. However, without knowing what you asked, it’s hard to tell whether it was a result of insensitivity or of the person who took your call being confused about what you were asking about. And, I would point out that by your own story the person you talked to did point out that your father would need a doctor to certify a prognosis of less than six months to live before he could qualify for hospice care. Why else would the question have been asked?

  10. #10 Michael
    May 5, 2008

    One thing I find unfortunate is that the hospice is even more closely associated with religion than the hospital. When my grandfather was dying, irrational as it was, I was horrified that it was at Sacred Heart Hospice with a Catholic cross hovering over him…

  11. #11 Annie
    May 5, 2008

    Visting here via ORAC, and the comments are insightful.

    Dr. Kathy Kolcaba at the University of Akron has done a lot of work around comfort (theory and application to practice), and the link at my name goes to her Comfort Line website, where patients, family and healthcare providers can find many useful resources and tools for use around comfort.

    As May 6-12 is designated Nurses Week, and hospice is very much a nursing centric model of care, I hope you’ll take a moment to investigate the services that your local hospice can provide and the special people who provide them.

    One thing to remember, regardless of what side of the bed you’re on: while a cure may not always be realistic, comfort, reassurance and presence always is. Death is not a medical failure – it’s a part of the life cycle.

  12. #12 JuliaL
    May 5, 2008

    Orac,

    To answer your questions:

    However, without knowing what you asked, it’s hard to tell whether it was a result of insensitivity or of the person who took your call being confused about what you were asking about.

    I began by asking, “How can we get some help in caring for my father who is dying?”

    And, I would point out that by your own story the person you talked to did point out that your father would need a doctor to certify a prognosis of less than six months to live before he could qualify for hospice care. Why else would the question have been asked?

    So I was supposed to guess from her asking me whether the doctor had told my father he had less than six months to live that Hospice requires a doctor’s certification of less than six months to live? Well, I didn’t guess it. She never mentioned certification or prognosis or even needing anything for my father to qualify.

    No, asking someone not in the medical field for a particular piece of information is not the same as informing them that a particular official prognosis is necessary for receiving help. As I was leaving my doctor’s recently after a regular check-up, the nurse confirming my insurance information asked if the doctor had told me to come back for a blood test. I said no. It seems that by your reasoning I will be in error if I don’t guess that it is necessary for me to come back for that particular blood test in order for my insurance to qualify as acceptable in that office.

    And why else would the question have been asked? I had no idea. It was as bizarre to me as her response to my stating we had no more money: she responded to that comment by recommending I should hire someone from what she surely knew was one of the most expensive nursing agencies in the county. What was I supposed to guess from that?

    I had just told the Hospice person that my father might die any day. The six months seemed idiotic to me. And I was completely unfamiliar with doctors telling people they WILL die within a certain calendar period; certainly I never heard of them officially certifying such a thing.

    I’ve shared my personal experience with Hospice as others have shared theirs. I haven’t argued that Hospice is nationally one way or another, only that my experience with it was so bad that the very name is now unpleasant to me. It’s fine if your experiences tell you that Hospice is wonderful. But please don’t try implying to me that I ought to have guessed which of her two comments to disgard as nonsensical and which to use as a clue to further guess what the Hospice qualifications were.

    I thank you for the information – now I know something important about Hospice I didn’t know before – and I absolutely deny that it was my fault my father did without that care because I failed to succeed in a guessing game that I didn’t even know I was in.

  13. #13 Jennifer Williams
    May 5, 2008

    I am a Hospice Rn in northern California. I cannot help but respond to the discussion regarding Julia’s posting about her negative experience with Hospice. Medicare, the primary “payer” for hospice care in U.S. requires a physician certification that the disease condition a person has; be it cancer, liver failure, COPD, Functional Decline, or Parkinson’s Disease have the probability of taking that person’s life within 6 months. We, as hospice nurses, evaluate patients daily while this certification is being obtained. We go into patient’s homes, meet with families, provide support, offer suggestions for comfort, and gently discuss end of life decisions as part of the process of preparing a patient and family for making the “Hospice” decision. When a patient or family requests hospice care we will move heaven and earth to make that happen. I can only say that I am truly sorry that Julia and her family did not benefit from the best that Hospice care has to offer.

  14. #14 Deepsix
    May 6, 2008

    My mother died of AIDS in January 2001 while in Hospice care. Sadly, I was out of the state when she passed. But, her two sisters and brother-in-law were with her.

    I always wondered if it was easier to accept the death of a loved one if you know it’s coming and can prepare for it, or if it’s easier if it happens suddenly. I think most people would say they would like time to prepare for it. But try living 11 years waiting for your loved one to pass. That’s not easy either.
    And that’s all I have to say about that.

  15. #15 wayne
    May 6, 2008

    Hi Julia,

    I’d like to second PalMD’s suggestion that your father’s physician should’ve been the “point person” for guiding you and your family through the end of life process with your father, an overwhelming one for anybody, so don’t feel guilty. You did the best you could do.

    My best friend was diagnosed with pancreatic cancer three years ago this month and, because it is so speedily fatal, hospice was one of the first topics discussed. Thankfully, I had the afternoon downtime and was able to help him hospice at home, so we could talk, eat lunch, vent, run errands, etc. I’ll never regret the time we spent hanging out at his home, listening to a Johnny Cash CD box set, talking about our eclectic musical tastes, watching the Food Network and arguing as only an Odd Couple who shared the very same birthday could.

    The end came quickly when my friend collapsed into what appeared to be a stroke-like state, and was transported to a hospice. He briefly came back to the world of the living, surrounded by close friends and family, about five hours later, then died that same night.

    I share this personal story only to remind you about the good times you had with your dad, no doubt, even at the end of his days, and not to feel bad about your decisions. Also, as PalMD said, please contact the higher-ups at the hospice organization you called about the poor experience you had. Nurses and help staff should be trained to spot those issues and serve you with more empathy and insight.

    Thanks,

    Wayne

  16. #16 DuWayne
    May 6, 2008

    JuliaL -

    I am so sorry to hear about your experience with hospice. I have known three people who died in hospice care and all of them had a far better end because of it. I have also heard of people having experiences like your own or worse. It’s upsetting to me, because when my uncle died, they really did great things to make it bearable.

    Pal -

    I am really curious about your stance on our death with dignity act, here in Oregon. Especially because you apparently have such strong feeling on the matter.

    I am a rather strong advocate of assisted suicide. I not only advocate allowing doctors to prescribe a fatal dose, but advocate proactive assistance. For example, rather than allowing someone who doesn’t wish to remain on life support to just die for the lack of it, I advocate helping them along – as painlessly and with as much dignity as possible.

    While I definitely feel that there needs to be very firm constraints in place, to ensure that all euthanasia is voluntary, I believe that it is my absolute right to make decisions about my own body, my life and how it will end.

  17. #17 trrll
    May 6, 2008

    Most people that I know have had a very positive experience with hospice. Hospice provided my sister with crucial assistance and advice in caring for our mother at home during her last weeks of life. Importantly, hospice nurses have a good understanding of the importance of adequate pain medication for terminal patients. Some physicians seem to have difficulty switching gears and realizing that concerns that are relevant to a patient with a realistic prospect of extended survival, such as opiate dependence and respiratory depression, become very much secondary concerns for a terminal patient with severe pain.

  18. #18 patrick
    May 12, 2008

    Greetings,

    My mother died in dec 2007 after a short 2 week period of hospice care, for the most part just a daily visit from the hospice nurse. As her condition deteriorated rapidly a doctor came and evaluated the situation. I had brought her in to see her physician just prior for a checkup and a chest xray followed by a cat scan and then a 1 week stay in the hospital to satisfy all family members that the lung cancer was terminal and unlikely to respond to any treatment. During this time my mother was confused, sleepy, unwilling to open her eyes.

    Regarding hospice, asking for estimates on the afflicteds remaining time to live was not my concern but seemed to be the question always posed by the family. An optimistic assessment by one of several physicians caused pain medicine to be rationed unnecessarily with the false hope of
    a return to partial awakening for a final conversation which never happened. Please do not withhold or limit pain medicines for the person in hospice care.

    Just after death, I asked for time to mourn to be free of any visitors but overzealous family members decided to immediately inform hospice. They came within the hour and disrupted my privacy. They seemed to be overly concerned with securing their narcotics and the other medicines for secretions, etc. My suggestion is don’t worry about calling hospice until you have are calm enough to deal with some paperwork.

  19. #19 KarenH
    October 30, 2009

    I just want to reiterate that not all Hospices provide the same level of care. I only heard great things and our local hospice organization promised a great deal about end-of-life care, and then didn’t follow through. They kept claiming they didn’t have enough staff and for whatever reason had my Dad moved from his assisted living apt., where he knew the nurses and aides, to the care center barely one day before he died. He exhibited all the signs in the hospice booklet for nearing death, yet the hospice nurse told us to go to work the next day and she’d ‘see you tomorrow.’ He died just over 5 hours later alone. Hospice provided no religious rites or grief support. They’ve offered no follow-up to any of us family members. Basically they took their money and ran. Really disappointing. They couldn’t even provide a volunteer to visit w/him once a week. So not all hospice groups are equal. I fully believe this woman had a bad experience. It all depends on the group she called. Just because you lucked into a good hospice doesn’t mean there aren’t bad ones out there. People need to do their homework.

  20. #20 Anonymous
    November 24, 2009

    the experience with hospice in my area was awful, at home they did fairly good but my dad started getting fluid built they said let him go to our hospital my mother agreed I had a sick feelin in my stomach I went everyday to see him and he was only in there for fluid mind you on a tueday by thurday he was feelin good you could see him feet he was very happy he called us every night friday they called for a family meeting my mother and i went and he would be coming home we were all happy this is where it goes wrong after we left they changed his medicines from what he was use to they put him on ms-contin 25mg he was totally out of it no more phone calls I got a call from my mother we need to go in and put a stop to it he was out of his mind so i met her over there she told them to stop giving him that he was now up to 45 mg, we went into his room he was staring at the tv and info commericials thinking it was a ballgame seeing things it wasn’t there,we told them to get him off of it the whole end of his nose was as blue as a blueberry we got very concerned. hadn’t had a bath in 4 days he had copd had to have oxygen they took him for a bath with no oxygen for 20 minutes I left after I made them get off there butts to give him a bath while mom stayed, that night we called no answer they never checked on their patients but periodically this is saturday now at 10pm I called the nurses desk he is fine just a sleep sunday at 413am he’s died I knew he didn’t belong there.they said when we got there he just died at 401am but they lied his body was cold but his back warm my husband looked down and the bedheater was on? his mouth open eyes shut wheres his false uppers? he always slept in them there gone? said he hadn’t urinated for 3 shifts? now you tell me he was fine friday coming home monday he dies sunday? he was overdosed and hsopice hospital in my area there nothing but dark death angels…he died oct 25 2009 I have NO KIND WORDS FOR HOSPICE

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