Do Not Resuscitate & Hospice

I can see both sides of this discussion and while I understand that families or patients may struggle with selecting DNR if their current medical status warrants hospice care, a full code, in my opinion, goes against the goals of hospice care.

Chest compressions, shocks, intubation and the whole set of services involved in a code are actually more harmful to a hospice patient and assures an end where they may not be able to say proper goodbyes to their family.

While respecting patient autonomy, a new model may be necessary to provide for patient care and comfort if they choose to remain a full code. It is not clear if palliative medicine provides enough, however, I am on the side of avoiding a code if a patient is enrolled in hospice due to my preference for avoidance of harm.

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BK Books replied:
Hi Simbiat, I agree with you. I am so puzzled as to why hospice would agree to resuscitate. It seems to me to go against everything that hospice represents. Yet, many working in hospice disagree with me and get quite passionate about their stance. Blessings to you. Barbara

Dear Germaine, I see the anguish and pain you have for signing the DNR for your son. I can think of no greater pain than having a child that is going to die. Parents are suppose to die first. Children, no matter their age, are to be our legacy, to live long after us. There is no greater grief.
I have no words to bring you comfort. Of course you feel you should not have signed the DNR, that your son may live longer if you had not signed it. Those are thoughts we all have when having to make the decision about someone’s else living and dying (only your pain and thoughts are intensified, are greater, because it is your son).
Sometimes the greater love is the sacrifice we make to decrease the suffering of another. I see that as what you have done here. You have given your son the dignity of dying when his body is ready to leave. You have not kept his body breathing and with suffering just so that he is here with you. You have given him the greatest gift of love., unselfish love.
My blessings are with you during this horrific time. Barbara

I have a broken heart today. I feel like I should not have signed the DNR so my son could die. I am so angry. the Drs gave up on my son then hospice can not help without my signature.
i cannot stop the tears. I think all hope is now gone that I will have my son for much longer. H e is too young,
Just looking for a little relief. I signed his life away.

Germaine

I volunteered at a hospice a few years ago here in NYC. One day they explained that if we saw people wearing a certain colored bracelet, that meant that the person did not have or had suspended their DNR and that we might see more serious attempts made for them. There was no explanation, but a new policy. Most of the volunteers were shocked that a hospice would do such a thing. This was a place that included people who were in home hospice but came here if they needed more medical attention and then went home once they were stable. Perhaps there was some connection her. It remained a mystery.

I have been in Hospice over 15 yrs. and quite frankly, I am a little scared of some of these comments…DENYING a patient care because of their right to chose? Not of the Hospice mindset? Though FULL CODES are far and few, I admit, I kringe everytime we have one. That being said, it is such a great oppurtunity for our hospice team to educate, educate, educate. That is why we are here and why we do what we do, as you know, many times we are the ones that have to be truthful, the Doc’s rarely are-most of them don’t understand hospice themselves or have no idea how to approach it…

You have got to realize that most of the time, hospice gets the late referrals and that the patients and families have either been given false hope for so long for a “cure” or they just were not comprehending the severity.

It is very hard to make the hospice decision and then jump right into a DNR. As someone previously said, families donnot want to make that decision…they feel they are “giving up” or “pulling the plug”. It has been my and my teams experience that once you gain the trust of your patient and families and continue educating, they sign the DNR or at least decide to keep the patient home and comfortable when the time comes. I am happy to report that 98% our patients convert to a DNR status prior to their death. Thanks, Heather S.

Do Not Resuscitate Orders in Hospice
For the first time, I find myself disagreeing with your take on a situation in the hospice community. In your blog, you take a pretty hard stance, stating patient in hospice should have a DNR.
Mandating a DNR for a patient to enter hospice would cause additional undo strife for a someone that has likely already been dealing with a new terminal diagnosis, and some very tough decisions. It could be argued that mandating a DNR to enter hospice is causing them to sign the DNR under duress. In other words, “no DNR no hospice services”, could be the way the message is interpreted.
In my experience working home hospice in AZ and now in KY, the clear majority of patient’s that come onto hospice as full code status, end up signing a DNR within the first week or two. They are usually just overwhelmed with a new diagnosis, and making the decision to stop curative care. They usually just need a little time and a little education from us. Even the few patients that never actually sign the DNR end up dying at home without being coded into the ED.
I believe it is our duty to bring them onto hospice with or without the DNR and provide the necessary support and education that will help them make an informed decision. But withholding the services provided by hospice is not the answer even if they feel the need to keep their status as full code.

Michael Duffy RN, CHPN

I don’t really understand the difficulty with accepting patients who are still a full code. It does not happen often and sometimes it takes time for patients and families to get to that place. So many times I’ve admitted patients and they don’t even know that their doctor referred them to hospice. Really nothing changes about their care. You are doing to educate as much as you can, and still provide aggressive symptom management and care. For those hospices who deny care to people who have not elected dnr status, shame on you for not only denying them the very special type of symptom management that hospice gives, but also for denying them the spiritual care that could help them process all of this. I have admitted a lot of people to hospice who were full codes, every one of them died peacefully at home, and were allowed to die by their family. It takes time, and as hospice professionals you need to get in the door as soon as possible. To avoid doing that on the basis that a patient has not come to terms with their death just yet, and to deny them important services is awful. Ideally we want them to get to that plave, but sometimes they can’t get to that place without us.

If there was hesitance to discuss or sign a DNR order on admission to home hospice care, I’d bring it up after a visit or two with the patient/family and gently tell them that a DNR is only initiated after a death. If I tried to force enough breath into a dead person to revive them, they’d die again without active treatment of the disease. Hospice was refusal of that treatment. They ALL signed.

John, I had to research this myself. What I found is that “statutory requirements for advance directives for hospice patients, which include do-not-resuscitate (DNR) orders, are not located in the hospice section, but in Section 1897 of the Federal law; this is the section that deals with provider agreements. It essentially states that hospitals, skilled nursing facilities, home health agencies and hospice organizations must comply with the requirement to maintain written policies and procedures respecting advance directive as they relate to all adult individuals who are receiving medical care by or through the provider or organization. -—The basic premise of this legislation relative to hospices and the DNR status of patients is to allow hospices considerable latitude on their actual service offerings, as long as services are explained fully to the patient or caregiver. Some healthcare providers and scholars interpret this law as indicating that hospices cannot require DNR as a condition of admission”. https://www.federalregister.gov/d/2017-08563/p-77

thank you Robin for expressing what most of us feel about the problem of Full code with patients who qualified for Hospice Service.
It is a shame that CMS requires us to admit patients on Full code if that is the patients wishes. So what we do is have all disciplines continue to talk and discuss the issue and in most cases, we are able to get the patient and family on board with DNR before the patient expires. Sometimes it is hard to make that “hospice” decision and the "do not resuscitate " at the same time.
Thank you Barbara for the leadership and forum for discussing our thoughts and questions.
Sharon

I live in rural South Carolina. While the majority of our patients sign DNRs at admission, we do still see some prefer the Full Code route. This tends to be a cultural decision, and we do educate, educate, educate when it occurs. We must also remind ourselves that our job here as practitioners is not to change people, or to make them see our way of thinking. We meet them where they are, and take them as they are. If a Full Code is what is requested, we do that but the process of education begins at that moment. We bring in the team when as a nurse, we cannot seem to make ground. We try to understand why there is reluctance and help the patient/family through it. More often than not, the patients and/or family come around and sign the DNR. Of those that won’t, it is not that they want CPR done. They usually say they absolutely do not want it done. It is usually that they just cannot bring themselves to be, as a family member recently said," The one to pull the plug." To some, signing that form is, ‘Pulling the plug.’

Great topic Barbara. Always a great topic for discussion, and a great way to learn how other hospice nurses, etc., present the case for DNR. You can never have too many methods at your disposal, since you never know which one will provide the comforting words the patient or family needs to hear.

I was unaware that the Medicare guidelines state that a patient cannot be denied Hospice because they are a full-code. Is this true?

Barbara,

Thanks for this posting and for being a voice of sanity in an often insane situation, when a loved one is dying.

The difficult part is that we often are having different conversations. Physicians value cure above all else. To most physicians, care is a subset of cure.

Whereas for nurses, care is the value above all else. We nurses think of cure as a subset of care.

For political and financial reasons, the cure argument tends to dominate conversations.

Respectfully submitted,

Jacqui Ioli, RN

Although I strongly agree with you, we cannot decline a patient utilizing their Hospice Medicare benefit due to the Right to Self Determination Act. Each patient has the right to their earned benefits whether or not they choose to sign a DNR or not. The DNR conversation starts upon the election of hospice benefits and continues throughout their care. We educate and document, rinse and repeat!

Which reminds me — I need to get my instructions in place. I spent enough hours in emergency rooms with family members such that I know that I do not want to die in the ER with tubes in every orifice. My mother’s at-home passing was beautifully arranged with the aid of the hospice team.

Thank you Barbara for being the sane voice! The truth may not always be easy to hear, but it is always the right approach. I personally always prefer it straight from the hip! Why do we so often try to save what can not be saved, while being so willing to pay such an unreasonable price for such failure?

Hi,
Hospice nurse for over 20 years and now a palliative care nurse practitioner at a large medical center.

I have struggled with this for many years. While I hate that there are barriers to hospice care…some that patients and family set, some the medical profession has created and some created by insurance companies…unfortunately in hospice we have to follow the Medicare guidelines for acceptance, which is that the hospice cannot deny a patient because they are a full code and while the hospice team will take this patient and continue to educate the family as you said for some it’s not going to change.

When I meet with a patient and family I recommend that if they want to remain a full code then they shouldn’t choose hospice. However most providers I work with know the Medicare rules and are most often looking for the quickest discharge and therefore patients on hospice who are full codes.

Not an easy solution.

Appreciate you post very much

Robin

The Hospice agency I work for requires patient to become a DNR. If a patient s condition allows them to be admitted to Hospice then why put the patient and family through the traumatizing ordeal of CPR when patient passes? Let the patient have some dignity in their last days.