Published Jul 7, 2011
SoCalRN1970
219 Posts
http://www.nytimes.com/2011/06/12/fashion/what-to-say-to-someone-whos-sick-this-life.html
VERY GOOD ARTICLE. I have seen many families, friends and extended family friends, cousins, friends from childhood all kinds of dynamics and relationships when it applies to that of a terminal hospice patient.
Being sick or facing end of life is a subject many are not comfortable with. Our culture is often one that does not freely speak of death or dying as a natural occurring part of life. It's often awkward for those who wish with all their might to make it "better" for the one who is sick.
This article has inspired me to think about the advice I'd give to those of a love one who is looking at end of life.
When you say "Is there anything I could do" really rarely would a patient direct you to do something. Instead of saying that action would be better. An action could be as simple as bringing a favorite magazine, food or music or personal care items if needed. These are little things that most would not ask for.
Terminal patients often lack energy. One of the toughest things that face patients with large family / friends is the ability to be "awake" to visit. A 30 minute visit or even a 15 minute visit can be incredibly fatiguing to a terminal patient. Bringing little ones, mulitple people or a party like environment are extremely taxing on someone with any advancing terminal illness. Boosts of energy are often followed with long periods to regroup and essentially recover from social exertion.
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This is a sensitive subject when it comes to the world of hospice. I have seen nothing short of a circus types of environment, kids playing, screaming, music on loud, tv on , conversations about the patient in front of the patient as if they don't hear and enormous amounts of people holding vigil... and a primary caregiver in the middle of it all with a migraine because she or he doesn't know what to do and doesn't want to hurt family friends, neighbors feelings, but wants a quiet comfortable environment.
Being an advocate is essential with a situation like this. But being an independent 3rd party not directly related to patient has it's benefits. I have often taken the party group aside and paint the picture of what's happening, stimulation, noise levels, etc. Having the heart to heart has allowed two goals for me. #1 A quiet peaceful environment for the patient who is passing. #2 diversion of displaced anger onto me the HOSPICE RN vs. the primary caregiver who doesn't know how to ask family friends neighbors to leave...
Often being the bad guy is not a great feeling, but in situations like this, I don't mind at all. Just my thoughts tonight.
lumbarpain, ADN, RN
351 Posts
I found that the greatest way for me to relate to a sick person is to have the experience of that sickness yourself. This brings you to their level of suffering(to a point of course) where you can relate and understand how they are feeling, what they are thinking and going through. I found that out after spending a week in a hospital and having surgery after my ovary decided to explode. Anyway.....Being on the other side of the spectrum gives that different perspective.
When you are the patient and you see a nurse walk in....the first thing I looked at was her face and noted that she was annoyed. So.....that started it off. I had one nasty nurse and she was a bad example that set me right in my attitude when I approach people. I vowed never to be a nurse like her, thus her negativity acted positively on me.....its strange...but it did.
Daisy_08, BSN, RN
597 Posts
this makes me think of a pt i had who was very young. she asked to be palliativly sedated because she could no longer take the sadness in her families and the nurses eyes. they day after she had so many visitors, i felt bad for them too but they were exhausting her and i don’t really think she needed to see all of her 2nd and 3erd cousins 20 at a time. a line had even developed at one point out side of her room. we ended up putting a sign on the door saying not to enter without speaking to a nurse. we then controlled how many went in and told them she could only take 15 min visits at a time and then needed to rest. some of the family felt like we were keeping them from her and were upset with the nurses, but when you know you are doing what the patient wants and what is best for them it doesn’t seem so bad. also understanding that the family needed to direct their anger somewhere, it just happened to be me helped.
i guess i went a little off the topic, but it just reminded me of this lovely young woman.
Linda-Lou
1 Post
Although I'm sure just achieving the two goals you mention was no doubt helpful, I hope a third goal was achieved in that situation: namely education. Especially in our northern and western culture, people don't know how to act around the dying, how to talk about death, how to behave in a hospital-like setting of any kind. For some, being present at all has probably required them to overcome fears and denial. Our society needs more exposure to the realities of death and dying, more currency with the vocabulary and more support when entering into such settings so that they can conduct themselves more appropriately. I, too, have been present with people who are dying and who find the endlessly cheerful visits exhausting. But maybe a little information shared and some good modelling could go a long way.
Linda Watson
http://talkaboutdeath.blogspot.com
ellen 12
79 Posts
So few families use touch. They too often pick a chair furtherest away from the patient. Hard to understand. I try to model touch - hoping people will pick up on this - but it's never worked to encourage families to offer touch or move in to sit closer to the patient.
tewdles, RN
3,156 Posts
With those families I would arrange a joint visit with the Pastoral care or MSW. That way we can support the patient and the family at the same time.