About Hospice(1)

Mainer1

I want to say some things about hospice and the amazing people who provide this service.  First of all, I can hardly comprehend how they do it.  Their patients are approaching end of life and it is the job of hospice to help make that process as dignified and pain free as possible.  It is not the job of hospice to make them better or to provide some sort of miracle cure, and yet hospice nurses are initially trained to care for people.  It is naive to think there is not some philosophical or moral conflict there and that hospice nurses don't have to confront it and manage it.  My wife's wonderful hospice nurse is a deeply caring and spiritually calm person, but as I have come to know her and as she counsels me through this process, I have found that we share some of the same conflicts.  These conflicts are made much worse by the sometimes "forever" of the AD end of life process and we both end up asking why and of what value is this pointless continuation while at the same time we are coordinating my DW's care.  

There is an interesting inconsistency of information between what I hear from the caregivers at the facility ("she ate well today"; "she seemed happy and was smiling today", etc.) and what I hear from the hospice nurse ("she is eating barely enough to stay alive"; "she has a fixed smile")  The caregivers are all about keeping people engaged and happy, while the hospice staff are about helping them die with dignity.  The caregivers seem to keep their own sanity by focusing on the positive as much as they can, while hospice is working toward ending.  

Lest we think that hospice nurses are immune to the pain of death, I recently spoke with one who lost her dearest friend last year and told me that she had been so unable to cope with that loss that she had to bury herself in work.  The concept of the "call", whether it be to the religious ministry or medical care, is never so clear as it is with hospice, but being called to hospice is not a "get out of jail" card for them.  As my DW enters her 28th month in hospice care I am in agreement with our hospice nurse who said last week that "this has to end soon."

sandwichone123

It is the mission of nurses to care for people. Unlike emergency services, nurses are not trained to "save lives," although that certainly does happen. Unlike physicians, nurses are not trained to cure illness, although they do have a role in that. Fundamentally, nurses care for people wherever they are in their lives, and help them set and move toward *their own* goals at this moment in their lives.

Many nurses feel a call to hospice after many years of acute and/or after the death of a loved one--either having seen how peaceful it can be or to assure that others don't end up with the outcome they experienced.

OutsideLookingIn

As someone who was a nurse before retirement, these sentiments have hit the nail pretty much on the head.  I think I can shed some light on how a nurse resolves the discussed conflict -- his/her focus is on optimizing the patient's well-being, supporting the family, and walking those last months/weeks/days with all involved to a graceful death. The nurse is also an advocate for the patient and their needs, even if they conflict with "conventional" medical thinking (which, as pointed out, is frequently focused on cure long after any cure is possible).  

Thank you for the words of praise for hospice workers and for the information given for those who are still in doubt.

OLI

Jo C.

A good Hospice nurse is a blessing to all of those they provide care for; they are blessings beyond counting.  It is also true that sometimes a professional in such a setting can begin to burn out or even become a bit depressed and not identify it in themselves; it can begin to take a toll before it is recognized.

If the RN is having a difficult time with feelings, it is something that is best not addressed with client or client family; that is a signal that the RN needs to have a break and step away for a bit.

Being an RN: Administrator of Patient Care Management, as well as a Consultant to Home Health and Hospices over the years, knowing those RNs  Social Workers and the aides has been such a privilege; their work is so important there are not sufficient adjectives. Bless them.   Sometimes, the Hospice Supervisors have to help an RN or other staff member who needs to step aside for a bit and recoup themselves; this is NOT a negative, but a positive so as not to lose the RN who is internally having a more difficult time and will affect their health if not dealt with.

The staff at NHs also have many losses and care for the patients they know they are going to lose; many of the staff will see a positive in the tiniest bit of a positive even when it is almost not present; they are not trying to "cure," they are caring for a person they have come to know in one way or another, who they have come to care about, and move forward each day doing their best under sad circumstances knowing there will soon be a loss.  Those little bitty bits of light that occasionally shines through just for a moment, such as a smile or even a sip of fluid or bite of food if wanted by the patient, is that sweet moment and bit of light that they know will soon be gone; but it is still that tiny bit of light that sustains them while they "take care." They will also share that with a family member thinking they are giving a positive for the family when things are so dire.

It can be difficult for everybody, and each person finds their way of managing while caring.

You have been a strong and faithul husband, partner and carer for you wife; a blessing to be sure.  May you find strength and solace in the next days as the journey's end approaches.

J.