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.
17 comments
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
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