Thursday, November 27, 2008

Engage with grace: End of Life Discussions

Does your family know if you want to be put on a ventilator if needed? 
Kept alive with i.v. fluids and nutrition? 
For how long?
So you have a living will or advance directive?
Can your family find it?

It's a tough discussion to have, but even tougher to discuss when you have a feeding tube in your nose, a breathing tube in your throat, and are unconscious. So, while everyone's enjoying turkey at the table this week, someone bring up the topic so that everyone knows how aggressive to be if you are facing death. The website, Engage with Grace, can help.


pemdas said...

I learned this lesson the hard way. 8 yrs ago, I had fulminant liver failure and didn't know it until I awoke from a 10-day coma with a newly transplanted liver. I was 40 and my father had to sign my consent. I'm glad he signed the consent and am alive today. But if something had gone wrong - more wrong than liver failure ;) - I don't think my parents would've had a clue what I wanted. They would have respected my wishes...I just hadn't shared them.

Completing an advanced directive and giving copies to everyone involved (family, doctors, etal) was something I did within a month of coming home.

I never again want to put someone in the position of having to guess what I would want.

Anonymous said...

I wholeheartedly support Roy’s suggestion. I was in the opposite situation to Pemdas where my brother and I had to make a difficult decision about my father’s medical treatment. He was in hospital and had developed acute respiratory complications following hip surgery. He was subsequently admitted to ICU. Even with a BIPAP machine, he was still unable to get sufficient oxygen into his lungs and his condition was critical.

The doctors gave us two choices, either: (1) undertake mechanical ventilation which involved a general anaesthetic; or (2) maintain treatment as it was. On the one hand, there was a very strong possibility that he wouldn’t survive the general anaesthetic. Even if he did, it was likely that he would remain on a ventilator for the rest of his life. On the other hand, if we did nothing, there was a remote possibility that he would survive. It was a fraught decision.

There had never been any discussion with my father about his wishes in a situation such as this. There was nothing to guide the decision making process. As I sat in the ICU relatives’ waiting room trying to make a life or death decision, all I could think of was that my father was a proud and independent man and would have hated to be dependent on a machine for the rest of his life. Fortunately my brother agreed and so we refused mechanical ventilation. My father died 24 hours later.

Last week was the two year anniversary of my father’s death. Inevitably my thoughts turned to that time in hospital and the agony of making the decision and watching my father die. Two years later, I remain convinced that we made the right decision despite the loss, the grief and the pain. But perhaps we could have circumvented some of the distress had we taken up Roy’s suggestion and discussed my father’s wishes before it was too late.

Anonymous said...

Seeing families fight while a loved one lies on the death bed multiple times has brought the possibility home for me. I've told my husband my wishes and trust him to carry those out if I'm not in the position to decide. But I still need to fill out that advanced directive.
Thank you.

Jackie said...

End of life discussions are really tricky, because a person's wishes could change as their condition changes. My father died of cancer at 53. If he had known a couple years earlier what he would've been like at the end, when the cancer had metastasized to his brain, he wouldn't have wanted extraordinary efforts done at that point to prolong his life. But at the end, he ended up wanting everything done to prolong his life as possible. Thankfully, this didn't involve a ventilator or anything like that, but it did involve a hospital stay, and continuing in a clinical trial when it probably no longer made sense. Someone's rational thought when signing somehting can be really different from what they end up really feeling in the moment.

Fat Doctor said...

I had a patient who, when he woke up after intubation was very angry that we had done so, but he did not have an advanced directive. The minute he was extubated, he asked right away for the paperwork and signed for allow natural death.

ClinkShrink said...

So after a happy and delicious Thanksgiving meal, two of the three Shrink Rappers had their end of life discussion. After watching the film Himalaya we both agreed we don't want to be left lying in the snow, in a blizzard, to die alone like a burdened yak. I'm also not too keen on the idea of a sky burial.

If I am ever in a turkey coma and unable to make decisions for myself, I do want to be maintained on pumpkin pie.

Anonymous said...

I think the reason this is so difficult is that there is no one answer that fits every situation (for me). I'd want extraordinary measures taken if I were in a car accident and my brain were intact, but not if my body was riddled with cancer or if I had Alzheimer's or otherwise had impaired mental function. I'd want to stay alive if there were a chance of a decent life, but not kept alive to suffer longer or to persist in a vegetative state.

FooFoo5 said...

Having lived, as a family, through the terminal colon cancer of a beloved grandmother with whom we lived, it became obvious to my mother (who has survived both colon & ovarian caner) my brother, & myself that an individual directive was essential. Not what the decision might be, but a directive. I bought a cheap legal software program (valid in all 50 states) that was simply a questionnaire. After answering the questions, a legal document is created, 2 witnesses sign, and you're done. It saddens me that my perception is that so few psychiatrists are called in to "consult" in emergency situations (and I strongly believe it's our own fault), and the last peolple you want advizing you is a medical team, responsible for your or a loved one's ultimate "end of life." I compliment you, Roy, on a courageous post, when most don't want to (ever) hear it.

Anonymous said...

This turns out to be a more difficult discussion than I expected (we didn't have it at TG dinner because we didn't want to freak out the kids), but DH wants EVERYTHING done, no matter what, and I want to be DNR, no matter what.

He also wants a traditional in-ground burial, which creates a real dilemma because he's 14 years older than I am, and I will probably outlive him. If he dies, I'm going back to my home state. I don't want to leave him untended and neglected in the ground in this state, bc we are only living here for business reasons.