First, let me thank all of you for your kind words. But as I wrote to a fellow blogger and in my comments on my previous post. I do not have MS. I am investigating it....lots of variable to take into consideration, lots of things to be ruled out. I was just asking any of you who where familiar with the disease if you wouldn't mind sharing what you could. I apologize if I lead you down a wrong path.
On a previous post I did on health care and the possible causes for the "crisis" as we see it, I mentioned that because of the technological advancement being made in health care, we are living longer, and able to save lives, where as before, we were unable.
While I was waiting to see the doctor the other day, I came across some literature he had in his office. They were called Advanced Directives and DNR. He told me that when ever he takes on an elderly patient he presents them with the literature and talks to them about it. I guess planting the seed.
In British Columbia our Health Care delivery is broken down into Regions or better known as Health Authorities. It is these authorities who are ultimately responsible for providing the funding to the hospitals and for public health care. Our Health authority has put out a series of pamphlets entitled "Advanced Health Care Planning". They are a series of 4 pamphlets. Pamphlet one is called a Planning fact sheet. It is to be used as a tool for planning advanced health care and talking about what health care you want in the future if you are unable to make or communicate those decisions for yourself. They say Advanced health care planning is a process of Learning about what health care treatments are available and what they can do for you. Discussing with your family, friends and health care providers what you think about the treatments available. Deciding what health care you want in the future based on your learning and discussing and finally Documenting your decisions in an advance directive(living will)making sure everyone(your family, your doctor, your caregiver) has a copy so when the time comes they can make the decisions you want them to.
Pamphlet 2 talks about CPR what it is, what you need to know about CPR, what are the benefits and what are the risks, Pamphlet 3 asks you to look at how much health care do you want? It describes 4 different levels of care. Comfort care, which means that tests and treatments are done not to prolong life but to maintain comfort. Limited Care, means more treatment than comfort care but less than surgical. That means if you develop a pneumonia you could receive antibiotics, blood tests etc., if you were bleeding you would get blood products...but there would be no surgical intervention. Surgical care means you would get everything under comfort care plus surgical, Intensive care means that everything a modern hospital has to offer. Again, this is something that should be discussed and your loved ones , doctor and health care provider need to know. The Pamphlet 4 talks about feeding, and for some the most difficult. It talks about basic feeding, supplemental feeding, intravenous feeding and tube feeding. The pamphlet reviews dehydration and the bodies natural way of shutting down and preparing for it's next journey, death. Families often have issues with not feeding their loved ones, for some it is very culturally ingrained that their loved one needs to be fed even if they are not alert enough. This then posses harm to the patient.
These are difficult topics to discuss, but very important. If you can talk about these issues for yourself or your loved one, it can save so much heart ache when the time comes. There is nothing more stressful on a family than to try to determine what their loved one would have wanted.
On many many occasions I have been asked by a family members what they should do. My answer to them is what do you think their loved one would want? What was their quality of life before this, had they ever expressed anything about if their heart should stop or if they should stop breathing would they want to be put on a machine. Have they ever mentioned if they couldn't feed themselves did they want to be tube fed? Again, these are very difficult questions to talk about, but let me tell you, when I have had to deal with families where these directives have been discussed, it was so much better for everyone. We could help with the patient passing as comfortably and painlessly as possible, as well as providing support to the family, and explain to them the process of dying. What they are seeing, what they can expect.
I can remember when my sister was passing. She wanted to die at home, but she and her husband had not done anything about a DNR. Had I not been there with them to explain that this was imperative to have, we would have had to call an ambulance and they would have been obligated to do CPR on her. I was able to get my sister into the hospital to see the doctor, discuss the prognosis...which she already knew....two days later she was gone. Peacefully and at home surrounded by loved ones. The way she wanted.
I know this may be difficult , but it is so necessary to discuss this if not for your peace of mind then for those around you.
Most of us are in the sandwich generation, and if your parents haven't discussed their wishes with you be brave and bring it up with them. They most probably want to talk about it anyways but just don't know how.
15 comments:
This is such an important issue for all families to come to terms with. I have had a living will for close to three years now and have hubby as my patient advocate. In the event he is unable to fulfill that role, it falls to my oldest daughter. They have read and signed it, the hosptal has it on file and so does my doctor. My family knows where it is in the fire box at home. This way, my wishes will be followed in the event I am unable to make my own health care decisions. I feel so much better having one! This is a great topic for you to bring up and remind people of...........but it is something I would expect of you being the caring individual I know you to be. Thanks for making more people aware of the need for this.
Many hugs, my friend!
I've been reading your blog for a while now and enjoy all of it but this post made me feel serene and confirmed for me that I know what I'm doing. I had to tell you that - thanks.
I've been a single Mom most of my son's life and decided very early to have all my ducks in a row. Blessedly nothing was ever needed and now my son is a grown man. I have a living will and very specific instructions about organ donations and funeral arrangements and so on - my son doesn't want to know but he and his wife know where they are, my baby brother is also given some power to help my son.
My greatest issue is that it is almost impossible to find a Doctor to be part of your team. I thought I had found one and then he was pulled into a larger practice and now I feel like a truck at the assembly line.
On a completely different topic - your photographs are beautiful.
I think that it would be very difficult to come up with a health care plan and system that everyone would be pleased with. Everyone wants to live forever and that gets pretty darn expensive.
How many heart transplants do you want to help pay for?
I think that any plan should include preventive health care, but what about the bottom feeders that ruin their lives and then want the rest of us to fix and support them for the rest of their lives? I know a lot of people like that, they are just sponging off of us.
No easy answers in building a good health care system I guess, I sure don't have them.
But I think that the rich should have to contribute more to such a plan.
I want to be tossed on a pile of driftwood at low tide and cremated there while others party and do happy naked pagan dancing around me.
But they don't allow that here.
Martie that is awesome..you have given your family a wonderful gift...the peace of mind that they know what your wishes are...
Dianne thank you for visiting my blog and for leaving such an insight comment. Again, I am so pleased to see that you had the foresight to have all of the done...your brothers reaction does not surprise me...I hear of that a lot..people have such a hard time talking about death, when it is such a natural part of life...
BBC as far as how many transplants and so on....yes some people do have very unrealistic ideas as to what should be done....generally that is because they don't know...and that they have never talked about the issue with anyone.
This is the problem when a patient comes into the hospital who is critically ill....doctors want to perserve life...that is what they went into medicine for...many doctors have difficulties acknowledging that some treatments and procedures are an excecise in futility...on to many occassions I have had my colleagues or myself speak to doctors about inapporpriate treatment, and code status. I have see the most bizarre code status orders...for example...."do CPR but now drugs or ventilation" now what is the point of that...crack someone's chest but don't given them any drugs to help bring them out of the leathal arrythmia...
As I said this is a very difficult topic for many to disucss..but persoanlly I would my family to know exactly what I would want.
So many people don't talk about what they want when the end comes, just like they don't talk about their funeral. It's inevitable that we will die so why not get it sorted out. MWM and I intend arranging our funerals and paying in advance so that neither of us, nor our children, have to do it when the end comes.
My Mom and Dad had everything planned out to the nth detail. When Dad had those 2 bad strokes last Jan., he kept repeating one of things he wanted us to do - something that was very important to him. So we did what he asked, and when the end came in Sept., everything was very simple (as simple as it could be) and straightforward. Their final arrangements were prepaid and all we needed to do was plan a small celebration of life (He absolutely did not want a funeral!)
When this was all done, my sisters and I looked at each other and said, "I guess it's our turn now to get our affairs in order." I must get to that one of these days, once I figure out what I want done.
This is a very good post. Thank you for writing it. J and I recently filled out these papers for Tennessee and Alabama. Laws are different in different states so you need to do one for any state you could be in when the time comes for decisions to be made. The forms can be downloaded and printed, then you need a witness to your signature.
I knew my parents wishes and they had signed papers two years before the day we were faced with the feeding tube question for Mother. I am so pleased we did so. She went home with hospice care and lived 2 months longer. She was able to take nourishment by mouth(only, not very much) until she died. Still it was better than the tube. She was alert and coherent and able to taste. Mostly she ate clear liquids or very soft foods. Sometimes she would ask for something which she could chew but not swallow, thus enjoying the pleasure of the food before spitting it out.
Blessings,
Mama Bear
It is amazing how many people don't grasp the importance of this issue.
I have talked it over with my family many times. I think my Mom being a nurse helps.
There are a lot of people and medical folks too, who see death as failure, or a "lost battle." I know that I won't get out alive, so I have always been very clear to my family about leaving quietly and with dignity. I guess I have just seen too much suffering, regret and indignity in my nursing career, as you have too. Thanks for bringing up this subject so eloquently.
Both of my parents are dead and everything went smoothly for me.
But I don't have a living will, given someone power of attorney to take care of personal matters, or a living will
Since I do home care I also briefly discuss with them about possibilities what can be done in our local area for health care.
But I have talk to my boys on some of these issue but I recall I found it more discomfort listening then actual talking about them
When my mother was dying from cancer the doctor asked us about DNR. I think it was the wisest choice we made due to her health reasons. Her suffering was horrible to watch.
This is a wonderful and much needed post. Too bad it probably won't get into the hands of more "non medical" people who are really confused over the whole issue in addition to not wanting to admit their mortality.
I've recently talked to my father, who lives with me about this very thing. He is healty so he is reluctant to discuss this situation. Being the persistant woman I am, I've mentioned it several other times. In my case, my father has discussed with me in detail what he would like. He calls it "quality of life." Instead of a DNR, I told him I'd rather have Medical Power of Attorney so that he can make all his own medical decisions until the time comes when he is unable, then I will make them for him.
He teasingly asked me if I'd be able to "pull the plug?" I responded very seriously to the question. "If I thought you didn't have the dignity that I know you want, then yes, the decision would be an easy one because I love you."
As usual, a much needed topic. My mother, who is still living but in a long term care facility made the decision to appoint me her medical powere of attorney. She lived with me for many years and I know what her wishes are. My husband and myself also made a will expressing our final wishes, right down to feeding tubes. It is a relief to know that our wishes will be carried out by our children.
you always write things in such a thoughtful careful manner- thank you for being such a good nurse and helping people realize things that really matter.....
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