I was directed to a conversation on a Facebook group that I follow. The question that started the conversation was, “Thoughts on hospice patients that are full codes. Then decline and are actively dying, but remain a full code? Do you initiate comfort measures?”
I am so surprised by this line of discussion that I have to write a blog about it. I am surprised a person can be receiving hospice medicare services and NOT have a Do Not Resuscitate (DNR) order. That a person can be on hospice, have their heart stop and have medical staff attempt to revive them or send them to the ER is to my mind against everything hospice is about.
Being on the hospice program is understanding that death is approaching and medically the process can not be reversed. Everyone dies. There comes a point in every life that death will happen. The hospice philosophy is that when a disease is not fixable, when death will be the end result, there are comfort measures rather than life prolonging measures that begin. The Hospice philosophy is not about the length of breathing but the quality of living.
I believe that everyone has the right to decide how they will live and how they will die. There are people that no matter the disease will want to have everything medically possible done to maintain their life. There are others that accept that their life is drawing to an end and want to be comfortable but not medically maintained. Neither choice is a right or wrong.
“Educate, educate, educate” is 90% of the work of a hospice professional. In the initial assessment that education begins. It begins with explaining our philosophy. The philosophy of comfort care, of helping a person live the best they can until they are not living anymore (with hospice referrals so late it is often more about helping the family understand that death is coming, what it will be like, and what they can do while it is happening).
Our services and care are not about whether we will extend the life through medical technology. Our services are about support and guidance while death is approaching. There is no room for not having a Do Not Resuscitate order and codes here. We educate the patient/family/significant others that part of the hospice philosophy is comfort care. If that is not acceptable then hospice care is not for them.
Something More about Do Not Resuscitate & Hospice: My book, A FINAL ACT OF LIVING: Reflections Of a Long-time Hospice Nurse, is a not only a reflection of all my years in hospice, but also a teaching tool for those in end of life care. There is a chapter on Do Not Resuscitate and Durable Power of Attorney.
18 comments
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
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