Caution - Palliative care information

abackhou
abackhou Member Posts: 77 Member
in Colorectal Cancer #1

I hope you do not mind me posting this from an article I have just read which some may find interesting.  

 

Quote:  It's from a Palliative Care female nurse, who has spent the previous 50 years in long-term, aged and palliative care. After seeing 13-year-old boys turned into quads after diving accidents grow old in care and watching dozens of terminally ill patients die, her opinions are worth listening to.

 

1. She doesn't believe in government-mandated euthanasia but isn't opposed to assisted dying. "Families will say, can't you just give my father an injection? I always say, why don't you do it? How can you expect medical staff to give someone a lethal injection and to have that on their conscience? That's not best practice, that's awful." There's a subtle difference, she believes, between the poisonous IV or injection that causes death quickly, often with terrifying results, and assisted dying, the removal of invasive feeding tubes for instance, that can take place over a number of days, where pain is managed and care and comfort is provided.

 

2. Mysterious therapies sometimes work. she is certainly no fan of new-age mumbo jumbo but she recalls watching a Reiki therapist help a dying man with a tumour at the back of his tongue. "His respiration was difficult, the most horrendous rattling, and this girl came in, put her hands on his chest and it just disappeared. I've never been believer but I did see that happen. I don't know how one person can have those skills. But it worked. It made a difference to this man in the last few hours of his life and it made a difference to his family who didn't have to listen to that dreadful noise. He was settled and he was calm. It was really beautiful."

 

3. Family conflict will always surface. "That's really a standout thing. In 90 per cent of families, there's always some conflict. And it's usually in those last few hours of someone's life when there's a lot of discomfort when all those old accusations bubble up, like, you're here now, but where were you for the last five years?"

 

4. Believe in chaplains. "Regardless of religion, chaplains play an important role in care. They're always such good people. It's really just about someone coming over and saying hello and establishing a rapport and giving someone a little prayer if they want it."

 

5. Palliative care isn't the horror you'd think. "It's actually a privilege to look after people at the end of their life."

 

6. Morphine isn't a miracle drug but it's close. "It's not a miracle because it doesn't change anything but it stops the pain. It has no ceiling." In second place of awesome drugs,we find Valium and its family of anxiety blockers. "At the end of your life it's not just the pain you have to relieve but the tremendous fear of dying."

 

7. Time given is as important as expert treatment. "In aged care, you can read someone the front page of the crappy local newspaper and they'll light up and say, wow, that was just amazing. They're so touched that you took the time to sit there for five minutes and read to them."

 

8. You can't change the behaviour of young men. And therefore every day another boy is going to spend the rest of his life in a chair. "Every mother fears their son wheeling a motorbike down the driveway. But it's never going to change. Young men between 15 and 30 will always ride motorbikes, play sport and surf and jump off bridges into the Yarra. And now with recreation becoming sillier and sillier and more complex there's a million options to hurt yourself."

 

9. Doctors aren't infallible. "There's an older generation that treat doctors like priests, that they can do no wrong. Now it's challenged all the time. Families know about medication. They have a lot more access to information. In response, instead of having steam come out of their ears, doctors have had to develop people skills."

 

10. Forget about last words. "I've never heard anyone whisper their final words or say something lovely to someone, smile, and then die."


Unquote.

 

Best wishes  Andrew

Comments

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #2
    Hi Andrew. I hope you're
    Hi Andrew. I hope you're doing well. That was very interesting. Thank you for taking the time to post it.

    Chelsea
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #3
    Thanks for sharing, Andrew.

    The simple reality is that we will all die, and many of us will see loved ones go before we do.  I was with both my sister and my mom when they died, and with my dad in his last days.  It's critical to have information on what to expect and how to make things as comfortable as possible, both for the person dying and the family (just as a side note, when my grandmother was dying, the nurse at the Christian Science home she was in asked my mom and sister to stop visiting her near the end, because their presence was interrupting her "work"...I thought that was an interesting way to view the process of death).

    We don't talk enough about death, and despite the highly religious nature of our society we fear it intensely, which leads to a complete lack of communication about one of the most natural things in the world.  More honest discussion would be better for all of us.  I think it can be done without killing hope.

    And I would say that I think #10 isn't entirely true..."last words" can come days before actual death (or even weeks or months...if communication lines are open, we can make sure we say what we want to say to those we care about as life is winding down).  In my dad's case, I fed him his last meal (those little mandarin orange slices in syrup-he loved those), and told him I loved him and that he had been a good dad.  He told me he loved me and that he hoped that he had been a good dad.  He went into a coma a few hours later and never woke up again.  So last words?  Maybe not in the sense that they preceded death by minutes, but close enough.  It really helps to make sure we get those last words said, whenever they come in the process.  AA

  • steved
    steved Member Posts: 834 Member
    #4
    Important

    Thanks for the post. I have often felt this site shys away  from discussions of death for fear of undermining hope but in truth this disease will kill a good number of us and the rest will die another way. Facing death with dignity intact and with accurate care from others is as important as anything that might offer a cure.

    Thanks again,

    Steve

  • devotion10
    devotion10 Member Posts: 623 Member
    #5
    Adding my appreciation Andrew

    for your posting this.  I have personally never shied from speaking of death or being present in the face of it and have been honored to be present for the death of grandparents, my father, and brother. The idea of assisted dying has intrigued both my husband and me and we have considered relocating to a state that has implemented Death with Dignity Acts (http://www.deathwithdignity.org/advocates/national). Oregon and Washington have led the way with this progressive legislature that defines the greatest human freedom being able to to live, and die, according to one's own desires and beliefs.

    Providing maximum comfort through palliative care all through the cancer journey is so important and can make living more worthwhile.  When you reach a point where you cannot stop the cancer, you can stop potential pain.  When my husband ceased chemotherapy -- he did not feel as if there was "nothing more that could be done for him" -- we just continued on with helpful indivuduals who continue to help provide him comfort and discuss ways to increase his well-being.

    It seems important for those with cancer to know about palliative care options and also know that they often exist in major hospitals even during treatment, not just at end-of-life.

    Have you been in Australia long enough for me to say thanks "mate"? -- Best, Cynthia

     

     

  • abackhou
    abackhou Member Posts: 77 Member
    #6
    devotion10 said:

    Adding my appreciation Andrew

    for your posting this.  I have personally never shied from speaking of death or being present in the face of it and have been honored to be present for the death of grandparents, my father, and brother. The idea of assisted dying has intrigued both my husband and me and we have considered relocating to a state that has implemented Death with Dignity Acts (http://www.deathwithdignity.org/advocates/national). Oregon and Washington have led the way with this progressive legislature that defines the greatest human freedom being able to to live, and die, according to one's own desires and beliefs.

    Providing maximum comfort through palliative care all through the cancer journey is so important and can make living more worthwhile.  When you reach a point where you cannot stop the cancer, you can stop potential pain.  When my husband ceased chemotherapy -- he did not feel as if there was "nothing more that could be done for him" -- we just continued on with helpful indivuduals who continue to help provide him comfort and discuss ways to increase his well-being.

    It seems important for those with cancer to know about palliative care options and also know that they often exist in major hospitals even during treatment, not just at end-of-life.

    Have you been in Australia long enough for me to say thanks "mate"? -- Best, Cynthia

     

     

    Thanks 'mate'

    Hi Cynthia,

    in answer to your question, yes I have been living in Austalia for the past 45 years, was born in England and came out to Australia with my parents and 3 sisters.   Take care.

    'Good-onya mate'

    Andrew

     

     

  • geotina
    geotina Member Posts: 2,111 Member
    #7
    Hello Andrew and Everyone:

    For the last few days of my husband's life (he was in the hospital) pallative care was chosen.  I made the decision no "heroic" measure, but everything to keep him comfortable.  That is why I,and many others, refer to it as "comfort care".  As an example, the nurse asked if she could administer a morphine drip.  Now, this was not for pain, George was not in pain, but it was to make his breathing easier as he was struggling with that a bit.  I said yes.  

    More important is to have a medical directive in your hospital file.  At our hospital, here in the US, without it, they are legally bound to throw everything they have at the patient.  With the directive, this does not happen.  The person named in the directive makes the decision, yes or no.  There were a few things I said no to, but the doctors are legally bound to offer it.  These decisions are not easy by any means, they are very, very difficult and yes, you do sit there in the middle of the night and wonder, kinda second guess yourself, if you are indeed, making the right decisions.  As an example, when the kidney doctors came in and offered dialysis, I asked if there was any possibility at all if doing so could reverse things and when their answer was most likely not, as he was in complete renal failure, I said no, not at this time.  Folks, this is not easy stuff.  I had to make medical decisions I never thought I would have to face.  I even had the monitors in the room turned off so I could concentrate on George and not the constant beeping as I found myself staring at the heart rate, breathing rate, blood pressure and the like.

    Well, I have rambled on long enough.   Pallative care is definitely a "yes" in my book.  If anyone has any questions, feel free to send me a pm.

    Love and Hugs - Tina

  • Aud
    Aud Member Posts: 479 Member
    #8
    Thank you, Andrew, for

    Thank you, Andrew, for opening this very important discussion.   Death is often denied in our culture, and in that we deny opportunities for families to be fully present when someone we love is dying.

    ~Aud 

  • YoVita
    YoVita Member Posts: 590 Member
    #9
    Thank you, thank you, thank you

    for this thread discussion.  I'm getting a lot out of the conversation.  Painful but needed.  Thank you.

  • KathiM
    KathiM Member Posts: 8,028 Member
    #10
    As usual, you share wise words, dearheart!

    One of my friends is a hospice/palative care nurse.  She and I discussed it once upon a time, and she feels much like what you have written here.

    I must say, though, that the 'last words' item I did hear from my mom.  Within hours of her passing on, after 2 weeks of laying still and comatose, not responding to my 'I love you, Mom' (something I had said every time I was leaving/hanging up the phone).  To my surprise, she turned her head, looked at me, smiled, and said what she always said "I love you, too, darling"....I carry that forever...

     

    BIG hugs to you, my dear friend!!!  Kathi

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #11
    KathiM said:

    As usual, you share wise words, dearheart!

    One of my friends is a hospice/palative care nurse.  She and I discussed it once upon a time, and she feels much like what you have written here.

    I must say, though, that the 'last words' item I did hear from my mom.  Within hours of her passing on, after 2 weeks of laying still and comatose, not responding to my 'I love you, Mom' (something I had said every time I was leaving/hanging up the phone).  To my surprise, she turned her head, looked at me, smiled, and said what she always said "I love you, too, darling"....I carry that forever...

     

    BIG hugs to you, my dear friend!!!  Kathi

    Not thinking in those things , got more important things to do!
    If it arrives I will have time to think about but for the moment I'm not thinking in dying so why to torture my self ?.
    Hugs mates.
  • taraHK
    taraHK Member Posts: 1,952 Member
    #12
    Thanks

    Thanks for posting -- and in general for opening up the topic. 

     

    Tara

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