Hospice, More Harm Than Good?

What?!? Well, I had to make it a catchy title for you to read on (I’m learning from the school of newspaper journalism) Really, are there times when hospice can do more harm than good? The brief answer is yes. Unfortunately, many physicians continue to refer to hospice when there is only days to weeks before the patient dies. The medicare hospice benefit allows physicians to refer to hospice if two doctors agree that a patient has a prognosis of 6 months or less. Our hospice has a median length of stay of less than 2 weeks!!! When a patient is on hospice for only hours to days it can sometimes be a disservice to the patient and family. Usually the patient has had a significant change in physical and mental status and further aggressive care is not indicated (it probably wasn’t indicated for months by this point, but what can I say, as doctors we just don’t give up). The doctor doesn’t want the patient to die on their watch and the hospital doesn’t want to have the death go against their mortality statistics and therefore the patient is transferred to home on hospice. At times, the fast transition from aggressive to comfort care is not fully understood by the family and they are then thrust into the caregiver role which can be completely overwhelming. They are then asked to care for their actively dying loved one even though they have no medical experience. They are asked to turn the patient every 2 hours, give medications for comfort such as morphine and lorazepam if they assess that the patient is uncomfortable. Did you catch that? They are asked to ASSESS their loved one when they don’t have the assessment skills that myself or other hospice staff have. Now, in all this, the hospice staff is doing their very best to educate, support and instruct the family how to care for their loved one, since hospice staff cannot be present 24 hours a day (there are exceptions), in a very short time frame. Usually the patient is uncomfortable and the hospice will instruct the family how to give the morphine and lorazepam (most common medications). To the family this is all a blur and the next thing they know their loved one has passed. In this scenario the hospice team has not had the chance to establish relationships and build trust. All the family or caregivers see is their loved one comes home, hospice comes in and out, morphine starts and the person passes away. Because they don’t understand their loved one would have passed at roughly the same time with or without morphine (I always reinforce that the medications are to assure comfort while the body is doing what it’s going to do), they think the morphine caused the patients death. I once had this very discussion with a nurse in a subacute care center because she felt that morphine killed her dad. She admits that he was in excruciating pain, but no matter how I tried to explain the role of morphine, she was adamant that the morphine caused her father’s death. This is the same with many caregivers, they have the power to discourage families from enrolling their loved ones on hospice, and many times they have been involved in the scenario above. So what to do? In no means am I advocating that patients should not be sent home on hospice if they are actively dying but I think someone (hopefully a Palliative Care Team) is evaluating the patient and family to make sure that hospice would be a good fit for the family at home. If it seems that the family is at high risk of being placed in a difficult situation that they will respond poorly to, a case can be made to keep the patient in the hospital on Comfort Care Protocol (there might be some push back from the hospital). In our hospital we have a Comfort Care Protocol and the doctor will fill the order and keep the patient in the hospital if the patient is too sick to be transferred. Occasionally a family will be adamant that they want their loved one to die at home even if it means risking their death en route to home. Other options include transferring a patient to a Skilled Nursing Facility or Board and Care on hospice care which allows the family to be family and others to provide the hands on care. Of course, if it were up to those of us in the hospice field we would prefer months of rapport building, education and interdisciplinary support that so many families miss out on when they are referred too late. In the cases of very late referrals, hospice care can be perceived as an unethical approach to the dying patient and cause confusion among family members and caregivers and in turn perpetuate the myths that hospice expedites and accelerates death. In the minds of these families “Hospice is more harmful than good”, and the families perception of truth is all that matters when they share their experiences with other friends and families which in turn can change others attitudes about hospice care at the End of Life. My hope is that physicians start to understand the concept that referring too early is always better than referring too late.

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7 thoughts on “Hospice, More Harm Than Good?

  1. We were involved with hospice for 3 months. They kept increasing the dosages of morphine and medazoline but my mom wouldn’t die. It was ugly. SHe had no pain and vitals of 95 pulse. 125/70 BP and 96 Oxygen. probably she wasn’t dying as she and her body weren’t ready. It was terrible and will haunt me all my life. She was like a scream mask at the end.

    • Cathie, I’m so sorry you had that negative experience with hospice. I will try and address some of your concerns, however as you know, I can only speak from my experience with my hospice and I would like to think that MOST hospices would be similar. Many times medications are increased not because we are trying to make a patient die sooner but because we may perceive someone to have symptoms other than pain such as agitation or shortness of breath. I often use morphine for shortness of breath and have seen it work wonders. Also, vitals may never change even at the time of death. We provide loose details of what to expect, but let family members know that all signs/symptoms don’t have to be present before someone dies. In addition, hospices don’t benefit from patients being on hospice for a very short time, as an Oncologist I spoke to once thought. The longer a patient is on hospice the more beneficial it is for the patient and family (they take advantage of all that hospice has to offer) and allows the hospice to be financially viable. Also, as patients die, often times the mouth is open and depending on her illness she may have lost an extensive amount of weight. An open mouth and a very thin face can be disturbing to some family members. Again, I wasn’t there so I can’t vouch for the hospice, but I would like to think that just as you had your mother’s best interest at heart, they also had the same interest and that all medications given were to accomplish that goal. I know that nothing I can say will take away your pain, but I hope that maybe in light of the above information you may see things a little differently which may possibly ease your pain. My deepest condolences.

  2. At first I would like to say that seeing a loved one go is the worst and most heartbreaking experience, and doesn’t matter how they go, there’s always something that would cause guilt, even if you did or didn’t do anything to help them during the process….
    I had the privilege of being by my mother’s side when she passed, after so many trips to the hospital, due to hepatitis C that she acquired from a blood transfusion in the 1970’s that caused Cirrhosis of the liver, after 27 years of dealing with all the consequences to name some; diabetes, internal bleeding, water retention that wouldn’t even let her breathe properly, etc…

    On March of 2016 my mother was reffered to hospice since her Dr said there was nothing he could do from his end no treatment, no pill, nothing could be done to extend Her deteriorated life.
    My mother died on June 16 of 2016 at home surrounded by her loved ones… 3 wks before that date, she went through a series of signs that indicated that things weren’t right… she didn’t sleep for 5 days straight, that’s when we started to take turns to be with her around the clock, we are a family of 8 siblings and at least 6 of us at the same time couldn’t control her, we had to hold her to prevent from jumping off her bed, she started calling relatives that she hasn’t seen in many years most of them are deceased, she kept repeating to us “let me go, please let me go”.
    My mother stopped eating and drinking, we had to use a syringe to put a few drops of water in her mouth but she would keep them in her mouth for a long time before she swallowed it, at that point we started administering morphine and lorazepam, we would receive instructions from the hospice team 24/7. She had a catheter to drain urine, to prevent diaper rash.

    For the next 2 weeks she lost weight, she became very pale, still she wouldn’t drink she wouldn’t swallow not even a drop of water… We tried to do things that she enjoyed like playing all her Catholic songs and read her bible around the clock my siblings and I had the chance to talk, hug and kiss her and repeated to her that it was ok for her to go… On her last day we noticed first thing in the morning that she kept looking at the ceiling that her nails were purplish we called the hospice nurse, by the time she arrived my mother’s feet and knees were super cold and super purple we held her hand and kept soothing her till her last breat…
    After all we were sad but happy at the same time because we never abandoned her we did everything possible to keep her comfortable, we couldn’t have done it without all the guidance, experience and support that we receive from medical and hospice team…
    Hospice did such a terrific job during these 4 months, they would come several times during the week to bathe my mom to wash her hair, they would be so gentle to her they would do everything possible to address all her concerns, the nurses were in constant communication between my mother’s doctor and with all the family members when needed. They were always there for us, literally 24/7, every step of the way.
    All we can say is THANKS, to God, to Doctors, Nurses and all Hospice staff members who did what they do best, which is to care for others (I don’t think there’s one person in the medical field who could do so much just for monetary compensation, it takes so much courage to deal with sick patients and angry ,sad relatives simultaneously).
    We are sad, we do miss our mother there are days that we regret choosing hospice because of the final product but, my mother didn’t die in hospital bed intubate, bleeding to death, she died in peace at home with her loved ones and we thank everyone who did everything possible to control her symptoms and ease her pain…
    If you have a relative that is close to death. Ask them what they want, a hospital, or they want to be kept home, painkillers to control pain, meds to control anxiety and shortness of breat…it is very herd to talk about this but it is extremely important to have all this discussed before your loved ones aren’t able to communicate with you and other caregivers…

    • This is such a heartbreaking read, but it is really a beautiful read as well. The love and devotion you gave to your mom during her tough journey from this life to the next was so precious and wonderful. Although it must have been so tough each day to be there and not be able to give her even a little comfort (small drops of water for her lips), your presence was the greatest gift you could have given. Thank you for sharing your story with us.

    • Omg it is so soothing to read your experience with hospice. I loss my mom on Aug 23rd 2016 a month today and I had started to feel doubt about putting mom in hospice care while at home. My mom lasted 2.5 weeks with no food or liquids and she passed surrounded by family and took her last breath in my arms. Thank God for hospice care and for all they did. Thank you for sharing your experience so much like mines. My condolences to you and your family.

      • My condolences to you and your family as well… It has been 3 months since my mother passed. For us has been really hard to accept, but as time goes by you’ll have a bitter sweet taste, for a minute you’ll be happy for your loved one not being in pain, but, at the same time you miss them so much… That feeling doesn’t go away, I’ve heard it remains with you for ever but eventually you just adapt and learn to go on without the physical prescence of your loved one…

    • IVP, thank you for sharing your story. In my years of doing hospice I always admired families who honored their loved ones wishes to spend their final days at home and did everything in their power to see that happen. As you’ve mentioned, it’s not always easy and to witness some of the things you did first hand, is not for the weak at heart. I hope you and your family continue to be at peace knowing you did everything to keep her at home, comfortable and surrounded by loved ones.
      -Hospice Physician

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