Sunday, January 9, 2011

Doctors and End of Life Discussions

Guess what, people, if doctors don't want to initiate this discussion, then it's up to you to get the ball rolling.  There's no need to legislate something that's this private; if end of life care is important to YOU, then YOU must be the one to ensure your doctors know exactly what you want, exactly how far you are willing to go and when it's time to rely on pure palliative care.

I was a bit miffed by this article in The Huffington Post.  Once again, someone opines that the government should get involved in something that is PURELY YOUR OWN responsibility.

"Oh they are already too gravely ill to discuss it."  Horse hockey.  If it's important to you, YOU have already gotten a living will together and every single one of your doctors has a copy on file.  You take it with you every time you have to have any kind of procedure.  YOUR FAMILY knows what you want, and aren't afraid to be your advocate if a time comes and you can't voice your wishes verbally.

And believe me, doctors are NOT averse to having end of life care discussions.  I've had plenty of them already.  If your doctor is poo-pooing your concern for this discussion by saying it's too early, or you're too young; honey, you need a new doctor.  If your doctor is unable or unwilling to LISTEN to your valid concerns, you need a doctor that will.

Good doctors want to give you the care that you feel is best; remember that they work for YOU, not vice versa.  I'm doing pretty darned well, but my oncologist and I have already discussed the trade-offs in my care vs my quality of life.  But another thing you have to remember is that YOU have a few doctors, but your doctors have hundreds of patients.  They will not remember every discussion you have ever had with them, and that is why it is incumbent upon YOU to get your end of life care directions put down on paper and drilled into the heads of your family.

And I know that family can be another huge driver in your end of life care.  Some people have family that won't listen to their wishes, due to many factors; spiritual, fear, grief... and again, this is why you NEED to get your desires documented.

I know, this article really pushed one of my buttons today.  But essentially, my own Living Will says, if I can be fixed, fix me, but if I can't be fixed then give me as many drugs as NECESSARY to keep me pain free.  Don't worry that I'll become addicted to pain killers; I'll be dead first.

Anyway, just understand that nothing in life is certain, even when you've gotten your ducks in a row, have all the documentation, and a DNR on the door of your hospital room,... and still someone ignores it.  Just do the best you can, and hope your wishes are understood and acknowledged.

Hugs to all... :)

8 comments:

  1. Hi Tequila
    I could not agree with you more on this. I wish my sister had done something like this but she was never given the chance.

    She was eventually told her cancer was terminal, it was in her throat, face, brain, bones, lungs and liver. I got a call from her saying that she was terminal and that she did not have the stamina to fight it anymore.

    She was not in hospice care, just the cancer ward where she had been languishing for several weeks. This was in Scotland

    In the UK they have what they call "The Pathway". It is super strength palliative care and is a bit disconcerting when you have no idea what is going on.

    The last time I saw my sis up and moving around was when she was first diagnosed 10 months before. I went to Scotland after getting the terminal diagnosis and was so dismayed to see the change in her, I hardly recognised her.

    The first thing the nurse said to me was did I want to have the saline and antibiotics drips removed. I was stunned, I had just had a 14 hour flight from AZ and gone right to the hospital from the airport so jet lag was pretty much in the forefront. My sis was pretty much out of it, she seemed to be pretty heavily sedated. I had no idea what to do. I asked if it would make it easier on her and was told it would, so I gave my permission. Oh My God, what had I done?

    She lingered for another 8 days in a semi coma, waking ocassionally not know what was going on or where she was. She had a line in her upper arm connected to an electric syringe/pump which was hidden under her pillow which went off every 5 minutes, just a big whoosh and a click. I think it was some kind of heavy duty morphine mix.

    Her kidneys failed first, which caused her legs to swell to the point where I thought the skin was going to burst. She just withered away, she became less and less alert as the days went on.

    I asked my other sister who had made the decision to put the pump in her arm, she said she did not know, neither she nor my niece had ever been asked/told what was going to happen. I had never dealt with anything like this before and had never heard of the Pathway, so I was totally ignorant of what was going on.

    At one point I tried to get her moved to hospice care but they told me it was too late and they could not take responsibility if she died in the ambulance, so she had to stay where she was.

    It was very painful watching her day after day just lying there slipping away and not knowing what I could do to help her. She and I did have one conversation which was very lucid and she told me I was her best friend and that she loved me, I was so grateful for that.

    I wish I could go back and do things over. I would have asked a lot more questions, it is not like me to just take everything at face value, but I was dealing with death and had no idea what was going to happen. As it happened it was a very peaceful passing with me holding her hand, but I wish it had been different, sorry I cannot explain what I mean.

    So, yes, please anyone reading this please get some kind of directive so that everyone is in no doubt as to what your wishes are.

    As a side note, we did find letters in her home that she had left each of us. We found them the day before her funeral and we had been fighting over what music to play. On reading the letters we found it had all been laid out exactly what she wanted. I wish she had done the same with her treatment etc.
    I don't think it is easy for anyone to talk about death. I know my sis was scared, she told me so. In a way I am glad she was pretty much out of it and was not scared towards the end. She went so gracefully and peacefully and I shall be forever grateful for that, it keeps my mind at peace.
    Peace to you today Tequila
    I know you have it all in hand. I need to go and do something about mine now I think, funny old thing with registering with new docs the past few days, I have been asked twice now if I have some kind of directive. Maybe I need to get one in place.
    Fay in the family room

    ReplyDelete
  2. Fay, thank you for sharing your experience with your sister. It really does help a lot. I know it must have been devastating for you, and I want to take from your experience and try to save my sisters some of that.

    Hugs to you, and keep warm. :)

    ReplyDelete
  3. It makes me so sad to read stories like Fay & her sister. Yes, it is hard to talk about - aren't all the best/most important things hard to talk about, and scary? It's a little odd perhaps but I'm reminded of the quote from A League of Their Own - "It's supposed to be hard. If it wasn't hard, everyone would be doing it. The hard is what makes it great." (I keep telling myself this at the gym too....) But it's so, so, so important. (Tequila, I have been completely impressed by your forethought and care on this front, in case I haven't said that.) As a hospice volunteer, one of the hardest things to see is people who don't know what their loved one wants.

    When my brother was ill, he was able to stay at home, with a hospice nurse coming to check on him. I remember getting up to make coffee (I had flown in the day before from the UK so my clock was completely haywire) and peeking around the door to his room - he was in the middle of the king-sized bed with his sweetie on one side, my sister and dad on the other, at least one dog, someone else asleep on the floor.... He died peacefully and quickly, in his own bed, surrounded by his family and loved ones. It sounds primitive, but we bathed him and dressed him, put notes in his pockets, and they came to take him to the crematorium. We went out for Chinese food and flew home to our various destinations (although my mother & I did split the end of a bottle of Scotch on the plane to Chicago). There was no fussing, not much squabbling even, and we were able to be fully present with him, rather than worrying about details or dealing with decisions. (Well, there was the matter of correcting his obituary but that was more because we are a long line of cranky academicians....)

    And yes, Fay, get a directive in place. :-) Most states have a free downloadable form.

    Much love from the frozen east!

    B

    ReplyDelete
  4. Beth, I think Americans need to understand more about hospice and what an amazing resource it is to help make that final journey less frightening, and/or painful.

    I know that not every pain can be assuaged, but sometimes, just the comfort of familiar surroundings, people and pets you love, etc. can go a long way to mitigate the fear. A touch; the grasp of your hand; the warmth of a hug or even someone singing your favorite song can bring peace.

    When my mom was dying, I had already lost a lot of my lung capacity, but I tried hard to sing to her because she'd told me one of the things that made those 'family car trips' tolerable to her was when we girls would sing. We would sing the entire "Evita," or other musicals.

    But when Jane went out to get us some lunch, I sang "Into the West," which Annie Lennox had done for "Return of the King." It made us both happy.

    I want my chihuahuas with me. :)

    ReplyDelete
  5. "Into The West" is perfect somehow.

    You're right about hospice. A lot of our community work is PR - that we aren't trying to kill people off, just trying to make it easier, give some respite to caregivers, give our clients some dignity and peace and comfort.

    And we used to sing musicals too, or barbershop/girl group songs or Sacred Harp. Handy to have at least three vocal parts represented. *grin*

    *hugs*

    B

    ReplyDelete
  6. Hi Beth
    Good to know you.
    My sis was in hospice in hospital when she was first diagnosed, it was all such a shock and very unexpected. The nurses etc were all very caring. Having said that I would have liked Kath to have been at home with all of us around her.
    The hospital in Edinburgh where she died was ok. The nurses did 12 hour shifts and were run off their feet. I was there 24/7 sleeping in a recliner in Kath's room so I saw all that went on. There were a couple of "Terms of Endearment" moments when I had to hunt someone down at 2 in the morning to administer something to stop her from crying with pain.
    The day she died, everyone was crying, even the tea lady. Kathy was a force to be reckoned with and wickedly funny and very, very irreverent, it was what made her Kath.
    I am going to look into the end of life thing. I only have my husband and my son and nothing much to leave LOL, but I guess it would make it easier on them if they new what was what.
    Kathy had her funeral all planned, if only she'd had her medical wishes known, but it all happened so quickly and so unexpectedly.
    Peace to you both as I sit here in the family room waiting for more snow, sigh, why did I leave AZ?
    Fay

    ReplyDelete
  7. Hi Fay, and likewise (I kinda feel like I know you from comments here already :-) )

    "I am going to look into the end of life thing. I only have my husband and my son and nothing much to leave LOL, but I guess it would make it easier on them if they knew what was what."

    Exactly - it's not so much about the things, but not having to think at a time when their brain and heart are otherwise engaged. Doing it now so if something happens unexpectedly, you're prepared is the greatest gift you can give your loved ones.

    Hopefully you didn't get too much snow. (We got about a third of what was projected, which is fine with me....)

    B

    ReplyDelete
  8. We got about 6 inches overnight. It looks beautiful but very cold. Princess Lu Lu the diva dog Lucy does not like going out in it, it touches her butt when she is trying to pee. It offends her to no end.
    Stay warm

    ReplyDelete

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