Working Caregiver- Palliative Care and Caregivers
Comfort for this family is to stop treatments that are no longer beneficial, add the best treatments in palliative care; hospices specialty, and bring their loved one home despite all the barriers.
Look at Hospice Now - Strategies in Palliative Care
written by Deanna Cochran, RN - Ask the Elder Care Expert, http://www.workingcaregiver.com/askexpert/lifeissues/palliativecareexpert
Why is Palliative Care so important to Caregivers?
I am sitting in the home of a family that I've been talking with for about a week. It is 10:15pm on Thursday and we have just finished eating cherry pie a la mode and talking, relaxing after a lengthy admission into a hospice program. 6 feet away from us is a man lying in his bed looking out of the window which looks over his land. During the day he will see his beautiful pond and watch the ducks swim around in it. He has not been home in 3 months
During the admission process, the conversations were realistic; worst case scenarios were discussed, hope and confidence instilled that keeping him comfortable was not going to be difficult. The challenge is that it may be really tough at times. Is the family up for the challenge? They are. He wants to be home and they are going to do everything they can to keep him here.
So why am I making such a big deal about this? Doesn't hospice do this all the time? What is different about this situation is he will be taken care of at home and will be on a ventilator and has a feeding tube to receive artificial nutrition. The hospice doctor, director, respiratory therapist, case manager and another nurse all came to help the family transition into the home. This is what he has been wanting. He is getting his wish.
This is not the way it used to be. No way would someone ever come home on a ventilator with hospice. Some may say hospice isn't about all this; and, I am really proud to be part of the hospice movement that responds to the person and family's definition of what it means 'to be comfortable.'
Comfort for this family is to stop treatments that are no longer beneficial, add the best treatments in palliative care (hospices' specialty) and bring their loved one home despite all the barriers. This family wants to continue with artificial nutrition, understanding that his body will be the leader in letting go of it, telling us of its ability to handle the fluid. Important for them is to preserve his dignity (very difficult in a hospital setting), enhance his communication capability, ensure his days are peaceful and that he can look out of the window he's been looking out of for 22 years.
Wow. Being in the presence of this throughout the evening is hard to describe. So much happened in such a short time. From 5:30 until 9:30pm, the whole hospice team stayed and made sure the family understood what was happening, what support they would receive, what was required of them and the team did not leave until all their concerns were addressed. There is a nurse here and there will be one here around the clock until it is determined otherwise.
I feel so much joy right now. Tonight another family is being given hope at a time when it seems like there is none. It makes the statement 'there's nothing we can do" sound silly, doesn't it?
The path from here to there, from where we are today to our eventual death seems a little wider to me now. It seems like the great emotional chasm from 'do everything' to 'comfort measures only' may be narrowing some.
This bridge is a big part of what palliative care is all about (the other piece to it is that it should begin concurrently with cure-directed treatment). What this family is receiving is excellent palliative care and the letting go of medical treatments that are no longer beneficial.
Each day the assessment continues, and the only thing being 'taken away' so far is his breathlessness and anxiety.
In peace,
Deanna Cochran, RN
The Quality of Life Care Project
