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What is the difference between palliative care, comfort care and hospice care?

June 29, 2009 by  
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Dear Viki,

I’m kind of confused because I don’t understand the difference between hospice care, palliative care and comfort care. Is there a difference between these and if so, why do each of the doctors say different things? What are they trying to tell me?

Great question. I think sometimes even doctors and nurses get confused by these different words to describe pain management and end-of-life care. The words do mean different things but many times they are used to describe the same thing, the support your loved one will get during the dying process. In practice, doctors may be saying the same things even though they are using different terms. Let me try to explain.

Let’s start with palliative care. This is the most misused term because it describes both pain management when you’re healthy and the support you receive during the dying process. Palliative care is the global word to describe all of the care that is related to relieving suffering. Let me say it in a different way. To palliate means to relieve or lessen without curing, to mitigate or to alleviate. So sometimes the patient may go to a palliative care specialist, even though they’re not dying, to help them get their pain under control or to alleviate their physical symptoms. They’re not dying, they are just asking for good pain management. It frustrates palliative care specialists when people think that all they do is take care of the dying. This isn’t true. They take care of the suffering of all patients. And one group of these patients happens to be the dying.

Hospice care is for people in the dying process. A patient can get palliative care without dying but you can’t get hospice without being a dying patient. There are also different kinds of hospices, both volunteer hospices and medical hospices. I volunteer at a volunteer hospice and we provide respite care and support for the patient and family. We are like a good friend who stops by to help out. A medical hospice will provide volunteers as well as visits from nurses, doctors, social workers, chaplains and nursing aids as well as providing the patient at no cost, symptom management medications, medical equipment and oxygen etc.

Hospice care can also be found in different locations. It doesn’t always happen in the patient’s home. It can also be found in an outpatient hospice, an inpatient designated bed in the hospital, in a skilled nursing facility, a board and care or assisted living facility. Your location shouldn’t determine your eligibility for hospice, although there are a few facilities who are not accredited to have hospice patients in their facility.

Now let’s talk about comfort care. This is a word that is most often used inside of a hospital. At some point, the doctor may come in and talk to the patient or the loved one about putting the patient on comfort care. Here is what they’re trying to say. They are saying that, at this point they have nothing else they can do to cure your loved one’s disease. But what they can offer you is to keep them comfortable and to help them have a good death. It may not mean that your loved one is dying immediately but that the aggressive treatments that they have been trying are not working to get them better. And now they want to focus on relieving the suffering and keeping your loved one comfortable. They are not abandoning the patient but they are changing the focus from curing to caring.

Now maybe you’re saying to yourself, isn’t the relieving of suffering like palliative care? Isn’t comfort care, palliative care? This is where it gets confusing again. Remember that palliative care is for both when someone is fighting their disease and when a person is in the dying process. In reality, the patient should be getting palliative care throughout their medical treatment experience. But sometimes palliative care is brought in very late and only as part of the comfort care (dying) plan. So you will want to speak up and ask for good palliative support while your loved one is healing and later on when they are dying. Patients should not be suffering or be in pain. Doctors now know how to take care of these symptoms, but if your doctor doesn’t or won’t help, then ask for a referral to someone who does. But be careful because some doctors will think you mean palliative care as in dying support. Make sure you explain what you are asking for, recovery support or dying support.

So, back to your question: If the doctor in the hospital says comfort care, they mean dying care. If they say palliative care in the hospital, they probably mean dying but they might just mean suffering care. You will need to clarify this with them. If they say hospice, then that means you will probably be discharged from the hospital to go home to die.

If a doctor wants to make the patient comfort care in the hospital, the patient can probably go home on hospice or perhaps to a facility that can handle their medical situation with hospice support. If your loved one wants to die at home, you need to advocate for them and say, “They would like to go home on hospice.” You need to speak up about where and how your loved one would like to die. They are entitled to a good death and so are you.

Have a kind and respectful day.

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Comments

37 Comments on "What is the difference between palliative care, comfort care and hospice care?"

  1. Ron Hochhauser on Wed, 7th Nov 2012 8:00 pm 

    My 44 y/o Daughter lives with my Wife & I. Divorced, w/6 y/o Son which is the main reason she has fought her stage 4 cancer for 17 months that has now progressed to several vital organs. Two Trails have slowed the process but now is progressing at a higher rate. Jolie has 50/50 custody of her Son. Jolie’s ex has given her a terrible time since their divorce, including extreme legal issues & attempting to control Jolie & her Son. The ex’s actions have added horrendously to Jolie’s failing health. Jolie’s Doctor is Dr Ena Sagota, Holy Cross Hospital, Fort Lauderdale. The Doctor’s nurse mentioned your organization & said it should be a good fit for us. We will be discussing Hospice/Palitive Care next week with the Doctor. I’ll attempt to talk to Jolie prior to that to find her desires for her future.
    THX for listening, Ron & Arlene Hochhauser

  2. Diane Baldi on Fri, 9th Nov 2012 11:17 am 

    Good morning Viki,
    I would like to clarify with you your definition and description
    of hospice care either by phone or via email.
    Your definition of hospice is not accurate in terms of ” for people in
    the dying process..”. The Medicare Hospice Benefit provides care
    to patients with a prognosis of 6 months or less.
    Please refer to our website, or http://www.nhpco.org for a clearer understanding
    of this invaluable and often underused care available to patients of all ages.
    Thank you, and again, would love to discuss with you!
    Diane Baldi RN. CHPN
    Chief Executive Officer
    Hospice of the Sacred Heart
    600 Baltimore Drive
    Wilkes Barre PA
    (570) 706-2400

  3. Denice Christian on Fri, 4th Apr 2014 6:37 pm 

    I read this article and it had just the right information I needed, my family is at this place and had so many questions but I know better understand. Thank you for posting this article.

  4. Delia Brennan on Mon, 13th Oct 2014 9:53 pm 

    Thank you so much for this article. I was confused by the term “comfort care”. My best friends mom is dying, and tonight they have begun comfort care. Thanks again. Peace.

  5. Linda on Wed, 16th Sep 2015 9:39 pm 

    My husband has many problems with his health and we have to use the V.A. He has to be tapped every 2 to 3 weeks. So each time we go to the hospital he see’s a different doctor and each one say’s something different from palliative Care, comfort care, to Hospice care. I know that he is in liver failure but what questions could I ask to get a better answer from his doctors. Thank You.

  6. Viki Kind on Thu, 17th Sep 2015 9:52 am 

    Linda, So sorry your husband is ill. Thank you for asking me this question. I think that what each of the doctors is saying is that your husband is moving into the last stage of his life. When lots of doctors are saying palliative care, comfort care or hospice, what they are all saying is your husband is dying. I am really sorry to be the person to have to say this to you so directly. I am not saying he is dying today or even soon, but his disease is taking his life. What you could ask the doctor is the “Surprise Question,” “Would you be surprised if my husband died in the next _______ (few months, few weeks, few days, etc.)? It is difficult for doctors to tell you exactly when someone is dying but they can usually answer the “Surprise Question.” This is a famous question that was designed so we can talk about prognosis. When my best friend used this question for her mom’s condition, it really helped because the doctor was able to give her the information that my friend needed to make the right decisions. Another question you could ask is, “When a person is having to get tapped every 2-3 weeks, what does this mean?” Or, “How long do people live when they are needing to get tapped every 2-3 weeks?” As a person who believes in hospice, I would encourage you to talk to the hospice team about starting hospice. I used hospice for my dad, my aunt and many other friends and family. They were able to provide the additional care, support, knowledge and caring that the patient and the whole family needed.

  7. Paul on Tue, 6th Oct 2015 11:32 am 

    Hello,

    As with a lot of folks commenting on this website, my family is also confused with this subject. My dad is 61 years old and had a subarachnoid hemorrhage (caused by a cerebral aneurysm). It was very severe. After about a week and half the doctors said there is possibility for recovery etc and they transferred him to a acute rehab hospital. He has been there for about 2 weeks now. The neurologist came to see him a few days ago (viewed his charts/reports previously as well) and said she doesn’t anticipate any recovery and the damage is too severe. In this case what is out best option? The reason is he is pretty much breathing on his own now and overall body is ok, but brain is extremely damaged according to the doctor. We are confused as we think he wouldn’t want to be in a nursing home just fading away. I view that as also comfort care but a very slow process, however, choosing so at the hospital he’s at now would just be faster. Sorry, not sure if I said that correctly. What should we expect if we choose comfort care? Will he starve to death? Would he even know he is hungry? Sorry, just trying to understand. Please advise. Thanks for all your help.

  8. Viki Kind on Tue, 6th Oct 2015 1:30 pm 

    So sorry your dad and family is going through this. It sounds like the right steps have been done so far. And that you are doing the right thing by thinking about what your father would say to do. Comfort care establishes the plan we will use to reach the goal of keeping him comfortable for however long he has. It isn’t that we are trying to hurry his dying along and we are not trying to keep him here. For many people, they may wish their dying would come sooner but we don’t hasten people’s death. The phrase we would use is to AND – allow a natural death. Which mean we are not giving treatments that will prolong his life, but only treatments that will comfort any symptoms he might be having. We are allowing nature to take its course.
    In general when people are dying, they naturally get less and less hungry and thirsty until they say, “No,” to everything. Depending on the amount of brain damage your dad has experienced, your dad probably don’t sense these needs at all. Based on how severe your dad’s brain injury is, over time, (I don’t know how long but you could ask the doctor for an estimate), his body will begin to die. There may be medications that are life-prolonging that your dad would want to have stopped. You can talk to the doctor. The doctor should be putting him on hospice now. Hospice can help wherever he ends up staying. Hospice will make sure he is well cared for for however long he has left. The way to look at all of this is that whatever choices are being made, they have to fit your dad’s life goals. The question to keep asking is, “What will ______ treatment/choice get dad and would he want it?” The medicine has to help the patient get to the patient’s desired goal. If it won’t work to achieve the person’s goal, then don’t do it.
    At this time, the goal is to feed him emotionally by saying words of love, telling him that he will be remembered and that he made a difference in the world. This can also be a time to hold his hand, hold him in your arms, stroke his hair, play music he loves, say prayers if that would be important to him, etc. The end of our lives are not about medicine, but about love and comfort and respect and dignity.

  9. shirley bernard on Tue, 13th Oct 2015 3:20 pm 

    My sister was diagnosed with dementia in 2010 and I did not find out ab out it until 2012 after her husband died. I took care of her after he died and found out she kept getting demoted on her job as a manager. I tried to take care of her but she could not stay alone at night and resented some of the care takers coming in. I am 78 and could not take care of her full time and put her in assistant living memory care at Brookdale in Northern Ky and I do not think they took good care of her letting her get UTIs and being abused by another patient. In one day she fell at facility and never regained any normalcy and could not walk. She had some hydrocyphulus but since she has begun tearing her hair out and agitated and medicines are not working they want to put her on comfort care at the nursing home. They do not think she could go underanthesetic to getMRI. They want to give her on haloperidol

  10. shirley bernard on Tue, 13th Oct 2015 3:38 pm 

    continuing- they want to put her on comfort care but still give her something for pain and something to sleep at night. Since she has had this for 5 yrs. do you think it is too soon for this? Also, if we decide to do this we have to agree to a do not recessitate. Is this the right decision as she seems so uncomfortable with her agitation

  11. Viki Kind on Tue, 13th Oct 2015 7:48 pm 

    So sorry that you and your sister are going through this. To answer the easy parts first. 1. Comfort care includes pain management and possibly medicine to help her sleep comfortably. 2. One doesn’t “have to” be a DNR, do not resuscitate, to be on hospice. Although, it is usually a good idea that when one starts comfort care – hospice, one should be a DNR. But there are a few people that choose to still be a full code. 3. Many of your other questions have to do with medications and I am not a physician so I can not address these. You might want to talk to the hospice doctor to get a second opinion about how to best manage your sister’s symptoms. I think talking to the doctor/s about her agitation etc. should be a high priority for you to address. People shouldn’t be suffering. 4. Dementia by itself is not usually a reason to be on hospice. There has to be physical symptoms as well. I can’t address whether it is “too soon” because I don’t know what her other health issues are and why the decision is being made “now” that it is time for hospice. One thing that might help you is to understand that hospice doesn’t have to start only a few days or weeks before someone dies, people can receive the benefits of hospice for months and even years before their deaths. The hospice team will determine if your sister qualifies for hospice which means that she is sick enough to die in the next 6 months. But that doesn’t mean she will absolutely die in the next six months. I know some hospice patients who have been on hospice for years. IF a patient continues to be “sick enough to qualify, the hospice team will submit information to the insurance company so she continue on hospice. So, even if it seems to be “too soon,” it might not be when we think about the long-term benefits of hospice. 5. Your main focus is to make sure she is “comfortable and comforted now.” Do what you can to make sure the medical team is doing right by her and then you an focus on making sure she feels loved and cared for by you.

  12. Toni on Mon, 14th Dec 2015 1:54 pm 

    My husband, who is 56 has had many surgeries, all due to kidney stones and sholder hips kne and spine since 2008. All of these joint surgeries had 1common factor (bone spurs and arthritis).not his spine, hips and elbow, are all covored in spurs and arthritis.After seeing the rheumatoid Dr., we found out he doesn’t have RA, so his is not controlled by a certain immune system medicine, and that l they could do is symptom control. His pain is always at 7or higher, because his GP WILL only allow him a certain amount of pain med, and thats it.Hes jad steroid shots,(many),pain stimulator, RF Ablation on many nerves and still has a level of pain that makes him have NO quality of life.Someone told me that I should look into palative care. Would he be a canidate for that, as I haven’t seen it listed in diseases PLEASE HELP

  13. Debbie Nelson on Thu, 21st Jan 2016 9:14 am 

    Please help me understand…… my friends Mom fell and hit her head,said she was fine and then went about her day. While lunching with friends, she fell asleep (went into a coma). She was admitted to the emergency room with the diagnosis of bilateral subdural hematoma. She has a living will with a DNR. They admitted her to the IMC with comfort care. In the next couple of days, they performed a Tracheotomy and put in an Enteric Gastrostomy Feeding Tube. They moved her to an Acute Care Facility and then to her home via hospice a week ago. It has been a month since she has been in a coma. Hospice has not given her water, except with medication since they began and they stopped feeding her 3 days ago. You can see that she is very parched. She is still urinating and has bowel movements. WE wish she would wake up. She is still in a coma. Yesterday, she lifted her arm when asked and the nurse saw her stroking her beloved stuffed teddy bear. She was also moving her legs and wiggling toes. I helped the Hospice nurse change her diaper and she reacted with signs of modesty e.g. trying to cover with sheet. Is she trying to wake-up? We are very upset that they have stopped feeding her. She has only been in a coma for 4 weeks and we feel that she has not been given a fair chance to recover from her injury and the surgeries they have done since. I don’t understand why they performed the Trach and Tube Feeding if the intent was not to try and help her get better. Now, they are starving her to death and it seems to us, that she is still trying to live, even though the doctors have been told by her husband not to do any aggressive treatment or medical intervention. Please help me understand, what is going on? Shouldn’t they start feeding her again since she is showing some level of thinking? Please help….. time is running out. Thank you

  14. Viki Kind on Thu, 21st Jan 2016 2:26 pm 

    Hi, I can’t give you a specific answer since I am not seeing your friend’s mom in person. But here are some of the things that might be going on. I too am a little confused also regarding why they put in the feeding tube and trach if they were going to put her on hospice right away. There may be a valid reason because her condition has changed but I would want to ask. (Is she still on the ventilator/breathing machine?) I do want to remind all of you who care so much for her that when it comes to medical decisions, it isn’t what the family/friends or doctors think is the right decision but what the patient would say is the right decision. It is very possible that she has a living will/advance healthcare directive that says she wouldn’t want to live if she weren’t going to recover to a condition that she would consider worthwhile. For instance, in my directive, I wouldn’t want to be kept alive if all I couldn’t recognize my loved ones. What we must do legally and ethically is to ask, “What would _____ (the patient) say if she could understand what has happened to her life and health, what would she say is the right thing to do?” And then we respect that. It is the law that we must honor the patient’s wishes, even when the family/doctor hates the decision. Another thing that might need to be addressed is that she might needs a second opinion regarding her coma. And I use the word “coma” loosely because often people call all sorts of different brain injuries coma but they aren’t all the same thing. It is very possible that the doctors know that even though she might “wake up,” they know that she will only wake up to a level of brain damage that your friend’s mom would find reprehensible. Waking up isn’t always equal to getting better. And there certain type of brain injuries that have movement and eye opening but that doesn’t mean they are going to get better enough. – Different types of brain injuries need different amounts of time to see if the person is going to get “better.” You might want to talk to the doctor to find out what is a normal amount of time to wait for her specific kind of brain injury. Next, in general, when feedings are stopped, it isn’t that we starving the person, but allowing the person to have a natural death because for most people, when they are dying – they stop eating and drinking naturally. But I can’t speak to your specific situation. Lastly, if you truly think that the wrong thing is happening, you are allowed to call the ambulance and have them take her back to the hospital. Even if she is on hospice. In general, people who are on hospice should never need to go back to the hospital but it might be a good idea in this situation. The first thing you/her family should do is to call her regular doctor and explain what is going on. Oftentimes in these situations, what appears to be happening is something completely different from what is really happening medically and the reason it is so upsetting is because no one has explained why certain decisions have been made. Most of the time the “ethical dilemma” is really miscommunication. But again, I am not there to tell you specifically. If she is dying, please make sure everyone focuses on making sure you are telling her that she is loved, that she matters, and that she is comfortable. The other person you might talk to is the hospice nurse or hospice doctor to get more clarification.

  15. Viki Kind on Thu, 21st Jan 2016 2:36 pm 

    I am soooooo sorry. I didn’t get this message and I am sorry I didn’t get right back to you. Hopefully you have gotten him the help he needs but let me answer the question anyway. When it comes to palliative care, any disease/injury/illness can qualify. If he needs to be seen by a palliative care doctor for pain management, then that should always be available to any patient who is suffering. If we are talking about the hospice/end of life side of palliative care, then yes, he needs to qualify. To qualify, you need to be sick enough to die in the next 6 months. It doesn’t mean you have to die in 6 months but that the doctor thinks that you might die in the next six months. The hospice doctor or patient’s regular doctor has a list of criteria he/she can use to figure this out. From what you described about your husband’s health, it doesn’t sound like he is dying just horribly miserable. But I don’t know the whole story. If he isn’t terminal (within 6 months), then he can still have the pain management side of palliative care. If he pain is being managed by the primary care, it is worth it to go to a pain management specialist. You may have done this. On a separate note, let’s talk about his suffering from a personal perspective. Constant pain at that level can truly make you wish you were dying. I have a relative that lives with that kind of pain. She has found a way to manage her suffering and still find meaning in her life. There are additional options such as mindfulness meditation etc that people try. (I am not a doctor so I am not giving you medical advice.) I just know that for some people, they have found something that while it doesn’t take the pain away, it makes it tolerable. I hope both have you have found some peace in this very difficult situation. And again, I am sorry I didn’t see this message. Hugs, VIki

  16. Debbie Nelson on Thu, 21st Jan 2016 10:46 pm 

    Thank you so much for taking the time to think about my post and respond. To answer one of your questions, yes… she has a living will that states if 2 doctors agree that a good prognosis is not possible, then DNR. But NO WHERE in her living will does it state, that if she is in a coma, stop feeding her and starve her to death. And I say it like this….. not to disrespect Hospice and what they do…. because I think that what they do is really wonderful and extremely helpful in most situations…. but because Beth (my friends Mom) is not necessarily dying (especially with the traech and feeding tube…. go figure?! but without food, she would for sure eventually die of dehydration, which to me….. in this case, sounds not right (just my unasked for, small brain….. opinion). Okay, with that said, Shouldn’t this wish (DNR) been respected when she was first brought in the emergency room…… before they put a large tube down her throat to make her breathe? And Yes… of course….. quality of life is what’s important here and unfortunately, something that cant even be diagnosed until/if she wakes up (just my understanding). Well that sure makes this very complicated and scary. From what I have read…… Because you just can’t really know how its going to turn out until you’re already headed down that road. Anyhow, let me update you with some good news….. her husband went to sit with her this morning and she had her eyes open and kept them open for some time. When asked if she could hear him, to squeeze his hand, she did. In light of this, her husband has decided to have Hospice begin feeding her again and to give her water and they are suppose to start P.R.O.M. (something I have been bugging them to do for weeks). She is now moving all limbs e.g. trying to help when we turn her, reaching up to touch her face etc.. I know that this doesn’t guarantee anything, in regards to her long-term outcome…… but it certainly gives me a ray of hope (whereas before, she just lay there….. while we watched. She was given a 4 on the Gasglow Coma Scale from the doctor)….. that anything is possible. At least she is going to have a chance…… albeit a very slim one…. but I’ll take it…. and go from there. She can breath on her own but not deep enough they said, so Hospice has her hooked up to an oxygen breathing machine. So if she passes now….. we can accept and live with that, because she is getting food and water. I hear what you say about hunger and feeding…. but my limited brain only knows, what it feels like to be hungry and parched, when it is healthy…. so it’s a little hard to “get” that someone could feel any other way. Thank you for taking the time to explain that to me. Do you have any suggestions for me….. any thing that I can do to assist her and help her have the best chance for making progress? By the way, she is 76 years old…… a sweetheart of a person. Very kind and loving. She never complains or passes judgment. She is a fighter, so if anybody can defy the odds…. she’s the one! I will keep you posted….. hopefully of progress. I was just thinking that…. if she wasn’t supposed to be here…… she wouldn’t be…. and if that were the case, I know that she would be in the best of care 🙂 One last thing, you are correct in assuming that “us”….. doubting Thomas’s, have not had access to any medical reports or involved in discussions with the doctor… so a lot of what is happening, does not make sense. I’m still confused about why they went ahead with the traech and feeding tube, if there was no intention to help her get better. In one of the doctors reports it states, that no aggressive treatment be given to her…. per the family. Go figure? Thanks again, I cant tell you how much it helps, just to be able to talk about it. Until today….. nobody wanted to hear it. You’re an Angel! Debbie

  17. Debbie Nelson on Fri, 22nd Jan 2016 12:27 pm 

    1/22 2016
    Update on Beth
    Today her eyes were open again and stayed open for quite awhile. The family doctor came into access her and she was able to respond to most of his commands. We are extremely hopeful and I anticipate that she will recover fairly quickly and could be trying to walk by the end of next month. Yes…. I know that is a bit overly optimistic… but why the heck not be? Now that she is receiving food and water again, if she were to pass tomorrow, we would miss her deeply but we could live with that, as her death would be natural. Hospice has been wonderful and the nurses are all well trained and have pleasant personalities. Their good care and kindness has helped make Beth’s chances for recovery possible and we greatly appreciate all that they have done for us….. and for Beth. Thank you, from the bottom of our hearts! Debbie

  18. Viki Kind on Fri, 22nd Jan 2016 2:24 pm 

    Debbie, I am so happy things are looking better and the appropriate changes in the care plan have happened. Beth is lucky to have you all watching out for her. You demonstrated for a very important lesson for all of us when we are advocating for another person. We have to keep checking in to see if the plan is actually working and accomplishing the goal. And then we have to brave and speak up until someone listens. One of the greatest gifts we can give ourselves is peace when someone is dying. Peace that we have made sure they got all the appropriate care they deserved. Peace that we told the person that they were loved. Peace that we did the best we could with what we knew at the time. — Debbie, I am going to send you an email with some improved ways to communicate our wishes to doctors that you can share with your family and friends. —- Okay regarding the fact they didn’t honor her advance directive when she was brought into the emergency room and she got CPR. This happens too much. The doctors are obligated to honor the person’s wishes when known, otherwise it could be considered assault and battery. And that would be a crime which is not covered by their malpractice insurance. OF course, sometimes the hospital doesn’t have the paperwork yet regarding the No CPR – DNR form yet so they do it until they are told differently. What state do you live in? You might want to check on the polst.org website to see if your state has one of these new and improved documents. — Next, regarding the trach and feeding tube. I am not saying anything bad about your particular doctors. I am only going to talk about this in general. After a person has been on a ventilator for a certain number of days, it becomes too damaging to the person’s throat to keep the tube down the throat itself. So they put the tube thru a hole in the person’s neck. This is usually done because they don’t expect the person to be able to breath by themselves again, or the recovery is going to take a lot longer so they put this in so the person has time to get better. The decision to put in the trach is a medical decision but it should also be a personal decision. It needs to be done for medical reasons but everything that we can do in medicine should be done because the patient would want it and it will benefit the patient. All medical decisions need to be made in the context of this individual’s life, health condition, and personal values. So the trach may or may not have been the “right” decision for Beth, but what should have happened is a meaningful conversation about what the trach decision would mean to Beth’s life. — The feeding tube is another decision that doesn’t get good conversations. Research has shown that 13.7% of the time, the family comes in the next day and the doctor has done the procedure to put in the feeding tube without anyone signing the consent form. This is definitely wrong/unethical/illegal. The doctor is supposed to have a conversation about whether or not the feeding tube will be helpful in achieving the patient’s long term goals. The decision needs to make sense medically and personally. But unfortunately, these conversations don’t always happen. Just like there is confusion for Beth’s family that the doctor’s note says, “No aggressive treatments per the family.” Now, it might be that the doctors told the family that her advance directive said, “No aggressive treatments” because of the No CPR instructions. But the decision to not have CPR does not equal the decision to have NO medical treatments. Sometimes people still want lots of other kinds of medical treatments, just not CPR. People should not jump to conclusions that NO CPR means NO treatments. This is a common mistake healthcare professionals make. Here is a link to a few articles about CPR decisions. http://kindethics.com/index.php?s=cpr+ — Okay, as you can tell, there are lots of ways communication can go wrong. This is why it is so important that people have these conversations with their families/friends so people will know how to advocate for them. I am glad you asked for help and that I was able to help. Please keep me posted on Beth’s progress.

  19. 4robin2heal on Thu, 4th Feb 2016 1:39 pm 

    My father is at the very end of liver disease. He has a deconpensated liver. It is a matter of days before toxins begin to take over his body and he has a great deal of ascites. He is very jaundice and was placed in hospice. Soon we will have to begin administering his comfort care meds to medically induce a coma before he suffers from the toxins taking over. He is very aware of his surroundings andis fighting this hard. I need advice on how to sooth him into taking the comfort care measures. He just keeps telling me it isn’t time, but hospice and I see he is in distress.

  20. Viki Kind on Thu, 4th Feb 2016 4:07 pm 

    Regarding your dad. If your dad is thinking clearly, he is allowed to hold off having his pain managed until he’s ready. For many people, the suffering is worth it because they can still have time with their family even if it’s just a few hours more. When the time comes that he can no longer make his own decisions, then you will have an obligation to manage his suffering and make sure that he is getting good palliative care pain management. I know that it’s very difficult to watch somebody be in pain, but for some people there is meaning and purpose in suffering and it’s not for us to judge because it’s their dying experience. There will come a time very soon where you will have to make sure that his pain is managed because he will no longer be able to advocate for himself.

  21. 4robin2heal on Fri, 5th Feb 2016 4:57 pm 

    I picked my father up today to take his guitar to be fixed. I noticed he was lethargic and a little sluggish. He did well until we left the guitar shop. He began to fall asleep off and on and was forgetting where he was until I asked was he okay. I had his hospice nurse come check on him and he said that it seems my fathers toxins are building up. I have seen him have encephalopathy episodes and his symptoms now are consistent. I gave him an extra dose of lactulose and am bow watching him so see if it helps any. Thank you so much for your response. You are very right, it is his choice and he is fighting to stay for myself and my two sisters.

  22. Viki Kind on Fri, 5th Feb 2016 7:02 pm 

    I am glad I could help. I will share with you that you will probably look back at these extra moments with your dad as a gift. When the time comes and he becomes unresponsive, remember that he still can hear and feel you. Hold his hand. Stroke his hair. Tell him you love him. I know I would give anything to talk to my dad again.

  23. Patty on Wed, 2nd Mar 2016 4:37 pm 

    Please help me. Emails welcome (suggestions, help pertaining to help only). My mama has dementia and a tumor on her brain stem. Mama needs refills for her meds from being in the hospital. SHE WONT GO :'( the dr mama was seeing in the nursing home (for rehab) is the dr I want to keep mama with but she has to go to his office to get established there before he will write her scripts for anxiety and blood pressure. She won’t let me take her to his office. My other choice is hospice BUT Mama has to have a dr to sign off on hospice and I found out that she hasn’t seen HER Dr since 2013 so he wont do it.
    Am I making any sense? I wonder about my own sanity! Someone PLEASE :'( help me 🙁 I just don’t know what to do.

  24. Viki Kind on Wed, 2nd Mar 2016 6:46 pm 

    There are doctors in most towns that make house calls. Call the doctor she saw in 2013 and ask if he knows anybody. You can also call the hospital and ask the emergency room doctors if they can help you find a doctor to come to the house. You can also try going on this website to talk to a geriatric care manager in your area. Just click on the box in the upper right hand corner and type in your Mama’s zip code. Someone should be able to help answer this quick question for you. If you need their help long term, there is a cost. https://www.aginglifecare.org/ Regarding hospice: You can call the local hospice company yourself and ask them to come out and evaluate her. If she qualifies, then the hospice doctor can call the rehab doctor directly and get her signed up. Worst case scenario, you can have have her brought to the ER and the ER doctor can put her on hospice. Start with the website I recommended since they will know the local resources for you.

  25. Denny Gregg on Sat, 19th Mar 2016 8:36 am 

    My mother died on March 17th, 2016. The Hospital that she was staying in for Comfort Care routinely did not give her the promised hourly pain medicine she required, and she suffered Convulsions as a result. Her transformation to the great beyond had to of been extremely painful. It was not Comfort Care, it was Torture Care.

  26. sue allen on Sun, 22nd May 2016 12:42 am 

    Hi i have to write a letter for my mom to the hospital asking for comfort care only and have a dnr in place we dont want her to suffer anymore please can anyone help with how to word it right thank you everyone

  27. Viki Kind on Tue, 31st May 2016 9:13 am 

    I am so sorry. Even though there are standards of care that we are supposed to be following, it doesn’t always go the way it should. Nobody should be suffering when they die, especially if they are in a hospital. If you are ever in a similar situation, you can call the ethics committee of the hospital or the legal department of the hospital for help. I know this isn’t any help now but perhaps others can learn from what your mother went through and we can protect future patients. Again, I am so sorry.

  28. Viki Kind on Tue, 31st May 2016 9:21 am 

    From Viki: I have a couple of questions. Does your mom have the mental capacity to speak for herself? If so, she doesn’t need to write it, she just needs to tell the doctor what she does and doesn’t want. If she doesn’t have capacity, you can speak to the doctor directly. You don’t need to write a letter. My other question is what your mom would say is the right thing to do? Medical decisions are supposed to reflect the patient’s point of view, not what the family would want. So if you know what your mom would say, tell the doctor. Ideally, you should say it like this, “My mom would tell you that ________________.” Let me know if you need more help.
    From Daughter: Hi Viki thank you for your quick reply ,mom can’t speak or nod her head or understand anything that’s happening, she is in a nursing home and her doctor told us because she has been back and forth to hospital with small ailments as well that we request comfort and care only, my brother and I have had long conversations with mom in the past and she requested that she wanted no aggressive treatment or tube feeding and we are unsure what to do ,as it was never put in writing so we don’t want to do the wrong thing do we just mention it to the hospital or the nursing home thank you
    From Viki: You should begin by talking to the doctor wherever she is right now. They can put in her medical chart that she would want to be comfort care, no feeding tube and no CPR, and that would probably be enough. If your state has a POLST form, then you can complete that as well. Not every state has one but your state may have a form called a POLST or something similar. What state are you in? You and her regular doctor or nursing home doctor can complete this form which will document that your mom would want no CPR, no feeding tube, and comfort care.
    From Daughter: There is no doctor at her nursing home.
    From Viki: Call her regular doctor and ask how you should proceed. Phrase it as, “My mother would want comfort care and no CPR.” Then the doctor can write a DNR do not resuscitate and order comfort care orders. Her regular doctor can communicate directly with the nursing home doctor and put the plan in place. This should be an easy thing to implement. Let me know if anything doesn’t work.
    From Daughter: Thank you so much for you help and advice viki

  29. Brenda Post on Fri, 10th Mar 2017 3:24 pm 

    My mom has CHF, diabetes and has had pneumonia twice and the flu once since christmas. She has fluid build up on her lungs and is not able to expel the c02 so her levels are getting high. She has had 1 really good day in the past two weeks and has stopped eating more than a couple of bites at a time. She is in and out of consciousness and is sometimes alert but most often you can’t understand her. The doctors and nurse have suggested comfort care. They said they could put her on a bipap to temporarily help her lungs work. She had a cpap and hated it. I told them no if it would cause her discomfort and suffering. I am struggling with whether or not I made the right choice. I also wonder if she should have hospice as opposed to comfort measures. My siblings are no help with the decision and I am feeling so guilty about it. How do you know if you have done the right thing?

  30. Viki Kind on Fri, 10th Mar 2017 6:59 pm 

    I am so sorry that your mom is so ill. It sounds like you are doing the right thing. When people start eating less and less, sleeping more and more, it may mean that it is the end of life. Since the doctors are advising you to have comfort care, it sounds like you are doing the right thing. It really isn’t about you making the decision but your mom’s body is making the decision. Comfort care is what they call this level of care in the hospital. If she is going home or back to a care facility, they should definitely put her on hospice. If for some reason, she starts to get better, she can always stop hospice.
    The way we know we are doing the right thing is 1. Think about what your mom would say is the right thing to do. 2. Get good medical advice about what are realistic choices. (You are not obligated to do medical treatments that won’t work.) 3. Ask questions about what it would be like to experience the choices the doctors are offering. (This is called the burdens or suffering.) 4. Based on the possible choices, make the decision that you think your mom would say is the right thing to do. And then make sure you do your best to minimize any suffering that comes with that choice.

    You are doing the right thing. Your job now is to make sure you spend time with her as her daughter, not her caregiver. Make sure everyone knows that there is limited time life so people should say or do whatever they need to so they will have peace after she has died. My heart is with you. You are a good daughter.

  31. Joan Kramer on Wed, 5th Apr 2017 7:26 am 

    My loving 85 year old mother has been battling lymphoma courageously the last few months. Each time she had chemo she ended up in the hospital with fevers and dehydration and then recovered enough for her monthly chemo treatment again. Finally, in February she ended up in the hospital and has not been able to bounce back as she had in the past. After 2 1/2 weeks she was sent to a rehab nursing home but her condition continued to deteriorate. She is to be dismissed tomorrow for home hospice. She has fevers every day and Tylenol is able to lower them, but the toll on her body is dehydration and weakness. An IV of fluids was given last week and she rebounded somewhat, but now is very weak and tired. My brother stayed with her last night and with water every 2 hours she was more awake and did not have a fever. Since she has always rebounded in the past he feels we have given up on mom. I see her as terribly weak and tired and want her to be comfortable. My question – why aren’t they continuing an IV and giving a blood transfusion – she has low hemoglobin? Shouldn’t the doctor’s be giving her a chance to make it? Mom has great faith so I expected her to say things about going to heaven and seeing her daughter and parents, but all she said was can you believe this happened? So I don’t know if she is near death or we are giving up too soon. Your thoughts?

  32. Viki Kind on Wed, 5th Apr 2017 11:41 am 

    Let me answer this a couple of different ways. First, I am not a physician so I can’t tell you what is the right thing to do medically. If you have questions about additional medical treatments, you should speak directly with her doctor.
    I do know that there are times when medicine is no longer enough. There are times when the body says, “I’m done,” even when the person’s spirit and hope says, “keep going.” Physicians are supposed to offer treatments that will actually benefit the patient and should not do treatments that are harmful with no benefit. Medicine is supposed to have a goal. And if the goal is no longer attainable, then we need to focus on comfort and hospice. It sounds like your mother has come to that time when medicine is no longer beneficial and only harmful. (Again, discuss with the doctor.)
    This is a sad moment to come to terms with when the person themselves isn’t ready to be done. And of course the family is sad that the time has come. As someone who works with hospice, I also know that this can be a very important, meaningful and profound time for everyone. We call it “life review” and “legacy work.” This is important work that most people want to do as their lives come to an end. It may be time for all of you to focus on telling your mother how much she means to you, that she has made a difference in the world, and that she will be remembered. I remind families that you don’t want to have regrets. Say and do everything you need to do. As a religious person, your mother may have spiritual needs that also need to be addressed. Don’t let her miss her opportunity to make her peace with her God.
    She also may not need to do any spiritual work because her faith is already very secure and at peace. She probably needs to talk about her fears, hopes and anything else on her mind. You and your brother can be that special person for her. She may also want to talk to friends and other family. You can call people she wants to talk to and hold the phone up to her ear if she is too weak. Don’t miss out on these amazing, beautiful moments at the end of her life because you wish it weren’t the end.
    Lastly, when people are actually dying, they begin to stop wanting to eat or drink. This is a very good thing because their bodies can’t process the food and water anymore and if we push the food/fluid in, it can cause terrible pain and suffering. She should be offered food and liquids if she wants them. (unless there are problems with her ability to swallow). If she doesn’t want anything, that is very normal and natural and appropriate. Many people I have worked with will ask for something simple like ice cream. Then they take one tiny bite and are satisfied.
    This is very symbolic of what we should be doing for those who are dying. We need to listen to their needs, not what we want them to want. It is about making sure that they get a good dying experience. Hospice should be able to support all of you in achieving this for your mother. My heart is with you and your family.

  33. Suzanne Holley on Wed, 5th Apr 2017 1:44 pm 

    I have been a registered nurse for 41 years. Most of my practice has been spent in the outpatient oncology setting. I recently started a new job in a hospital on an oncology unit. Even though I have been a nurse so many years, I was not prepared for a situation I encountered yesterday. In my patient assignment I had a female patient, 76 years, diagnosed with stage 4 lung cancer. She was alert and oriented , able to eat and drink (able to feed herself) and had agreed with her doctor that day to stop chemo and radiation therapy. The doctor advised comfort care and consulted hospice and pastoral care. The doctor had previously started a morphine continuous infusion to titrate for pain control. The titration was by nurse, not a patient controlled pump. The patient was coughing up bright red blood and had a “rattle” in her chest. When I gave report to the oncoming nurse for night shift, the patient was comfortable on 6 mg of morphine an hour. She had started the 12 hour shift on 2 mg an hour. I had also given her some immediate release oral morphine during my shift. The patient had eaten 3 meals and had sat on the side of the bed and had visited with numerous friends and family during my shift.
    When I came in the next morning, the room was empty. I asked the nurse I had given report to the night before what had happened. I was totally unprepared for what she said. She told me that the patients breathing had become more laborered and that she was coughing up more blood. She said she called the doctor and got an order for IV Ativan to relax the patient so that she would go to sleep. She said when the patient went to sleep, she turned up the morphine and the patient died shortly thereafter. She said all this so matter of fact. It just stunned me. I guess it showed in my reaction. The nurse said this is comfort care. We help them die.
    I am struggling with this. Did she help this patient die or did she kill this patient? I’m not sure I will be able to deliver “comfort” care if this is the accepted process. The nurse said the patient was drowning ibecause of the blood in her lungs. True, I wasn’t there and didn’t see, but is this a decision nurses are expected to make now?
    Having spent over 30 years delivering outpatient chemotherapy and helping people to live with their cancer makes the transition to helping people die with their cancer surreal.
    Comments?

  34. Viki Kind on Thu, 6th Apr 2017 9:55 am 

    First, I am not a physician so I can’t give you medical advice. As a bioethicist, I can discuss this from an ethical point of view. Many palliative care specialists and hospice nurses have told me that very large doses of medications are used as symptoms increase during comfort care and hospice. In ethics, we evaluate the use of these larger size doses using the “Principle of Double Effect,” (the principle comes from Catholic doctrine), and it says that the intention of an action matters. The same action may have two different outcomes but as long as you are intending the good outcome, then the action is okay. So, a large dose may be given because the intention/goal is to manage the terrible pain; not to hasten the person’s death. Even though we know that there could be a very small chance of a second outcome; that the larger dose will slow down or stop the person’s breathing, we aren’t intending it so therefore it is okay to give the dose. That is double effect. So if the nurse was giving additional morphine to manage the pain, then that would be okay. She was helping the patient die peacefully. If she was giving the morphine to hasten the death, that would be unethical and illegal.

    As nurses, you are supposed to evaluate the pain needs of the patient and if there is in pain, then you treat it following the physician’s orders. If you evaluated that patient was comfortable and had no pain, then you wouldn’t give additional pain meds. Unfortunately, I do hear stories of professionals who are giving pain meds when there is no pain. I worry about this because medical actions need to be done to achieve a specific medical purpose. We don’t do medical treatments for no reason. We do them for the right reasons – that the treatment may be beneficial and the patient would want it.

    I would encourage you to ask this other nurse what the goal was in that situation. Was she hurrying up the process or was she managing the symptoms the patient was experiencing? One is allowed, the other is a crime.

    Lastly, I would like to thank you for bringing up this important topic. As professionals, we have to hold ourselves, our colleagues and our organizations to high ethical standards. On a personal note, because you have come from the specialty of oncology, which has a very different viewpoint of the goals of medicine, you may need to acclimate yourself to the standards of care found within the specialty of palliative care. I have known pharmacists that transfer into palliative care who are often uncomfortable with the very large doses that are being prescribed until they learn the standards of palliative care/hospice/comfort care. Palliative care and hospice are wonderful and meaningful areas of medicine to practice within. The goal is never to hasten death but to help patients live with a good quality of life for as long as they can. If we can manage their suffering, then patients can do their legacy work so when their time comes, they will have peace.

  35. paula clutter on Sat, 6th May 2017 3:10 pm 

    TY for your website-very informative;I am 61 and have had 2 strokes.I’ve become curious about and thought to ask my PCP if there is “an expected length of life” for someone who has already had 2 strokes. This article taught me that it might be appropriate to ask the Dr. the “surprise” question. Also that I may want to prepare and advanced directive…do you think this would be appropriate?

  36. JEAN A GREEN on Fri, 24th Nov 2017 8:35 am 

    I was glad to run across this site while researching comfort care. There are so many doctors who resist prescribing or increasing pain meds when the patient is unable to speak for themselves to say what they pain level is. When someone is moaning, drawing up their legs, clenching their hands together so tightly their fingers cannot be pried open to check their path level, and the expression on their face is drawn with eyes tightly closed it is a very good indication that their pain level is NOT being managed. Stand up for your loved one and insist that the medical professionals utilize any and all means of bringing comfort to someone’s suffering and agony.

  37. Violet Care on Wed, 18th Jul 2018 12:14 am 

    Great blog . I am impressed. Its very informative and useful.

    Thanks for sharing with us.

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