Big Losses and Big Lessons

[CuppaJoe]

One things folks could do, especially after ER when there is presumably more time, is be a hospice patient volunteer. Most programs encourage volunteers, after some training, to visit the patients, whether at home or in a facility, to spend some time with them and hopefully brighten their day or just have somebody there. As the medical folks may be able to confirm, too often families do not visit much for a variety of reasons.

I have never been a volunteer, but it is one of the things I have thought about doing after ER, assuming I have the stomach for it. I learned about the volunteer program when we had a relative in hospice.

I’m surprised and happy that over the course of a checkerboard career, I’ve been able to do some varied (paid and unpaid) charity work during business hours, including work on the initial stages of setting up The George Mark Children’s House which is a place for terminally ill children and their families to go to relax away from the hospital setting as well as serving as a hospice. (For some reason I couldn’t get the link to work but if you are interested, it is easily googled.)

 

[Dreamer]

I think that it takes a special person to work in the medical field. I could never do that kind of work. I am deeply appreciative that there are people that can do that kind of work and it is so nice to know that they are so caring. Thank you so very much. I hope that you don't have such a tough week again.

 

[FinallyRetired]

My purpose for posting was to shine a light on the contrast between death when all advanced directives are reconciled versus the additional pain when they are not.

Rich, and others

This is a fascinating article on cardiac arrest and what doctors are able to do in some instances to bring the person back. In some ways this is a counterpoint to the "do not resucitate" question, though it's a difficult and personal decision between a patient and their doctor.
Doctors are reinventing how they treat sudden cardiac arrest, which is fatal 95 percent of the time. A report from the border between life and death.

http://www.msnbc.msn.com/id/19751440/site/newsweek/page/0

 

[ndfmnlf]

Constant education of the patient and family is needed to ground them back to realistic prognostic expectations. This is easier to achieve when the illness develops slowly, giving the patient and family enough time to digest the bad news. It is harder to achieve when the disease process is rapidly progressive.

But there is a subset of patients and families who, despite all the information and advance warning you give them, refuse to accept the inevitable. They seek second, third, and fourth opinions from other specialists, looking for someone who will tell them what they want to hear. This isn't necessarily a bad thing; in fact, I am pretty liberal about referring patients to as many specialists as they want to see. Yet, even when the verdict is unanimous, some patients still want a miracle cure. I don't believe this is a function of educational level, as I have seen highly educated families harbor unrealistic expectations, while high school graduates manifest a very good grasp of the dire implications of their diagnoses.

 

[Susan]

I also appreciate what the medical profession does, seeing it from both sides - as someone who has a step-daughter in a pathology residency and as a wife who had to make the decision to end her husband's life, the father of my step-daughter. There was some struggle on my step-daughter's part in that she thought if her father had a 1% chance of recovering, he still needed to be left on the ventilater; however, I worked with the wonderful doctor who convinced her that he would never recover and so she agreed to let him go.

Thank you.

Susan

 

[haha]

Constant education of the patient and family is needed to ground them back to realistic prognostic expectations. This is easier to achieve when the illness develops slowly, giving the patient and family enough time to digest the bad news. It is harder to achieve when the disease process is rapidly progressive.

But there is a subset of patients and families who, despite all the information and advance warning you give them, refuse to accept the inevitable.

Coming from this stance, how would you see Ted Kennedy's surgery decision, as described in yesterdays NYTimes? (7/29/2008 )

http://www.nytimes.com/2008/07/29/health/29docs.html?_r=1&scp=1&sq=Ted%20Kennedy%20surgery&st=cse&oref=slogin

Ha

 

[Walt34]

Thank you Rich.

I will never forget the nurse who was so kind to us when my mother died. There must be a special place in heaven for people like her.

 

[Dawg52]

I concur with the rest here. Sounds like you are very caring and have very good bed side manors. I'm sure it's tough to put experiences like these aside when you go home at night.

I wish my brother could have had doctor's like you when he was sick. After he had a cancerous tumor removed, he was talking to the chemo doc about his course of treatment. He casually told the doc that he always thought he would live a normal life span as our parents. The doc replied....."you will never live to be an old man." A pretty cold thing to say as my brother and his surgeons were being positive at that point. Pissed me off as it really gave my brother a negative attitude from that point forward. Of course in the end, the guy was right.

 

[SecondCor521]

I'm the designated backup plug puller for my Mom and Dad (they're each the primary plug puller for each other). They both have all the living wills and so forth already written up. I have two sisters who live in other states.

Even though my parents and I have different preferences, I will fully respect their wishes when their time comes. While I know what their wishes are in general, I am a little concerned about the possibility of a situation that falls into a gray area and might require a judgment call at a point where they won't be able to tell me what they want.

2Cor521

 

[Rich_by_the_Bay]

While I know what their wishes are in general, I am a little concerned about the possibility of a situation that falls into a gray area and might require a judgment call at a point where they won't be able to tell me what they want.

I'd guess that's the case (gray zone) about 75% of the time. The challenge is to understand the spirit of their wishes, not just the explicit, concrete instructions.

 

[SecondCor521]

I'd guess that's the case (gray zone) about 75% of the time. The challenge is to understand the spirit of their wishes, not just the explicit, concrete instructions.

75%? Oh dear. The spirit of what they want is to not waste a lot of money or hope or time if they're not going to recover. Pull the plug ASAP, basically. And make sure they're not in pain, I'm pretty sure. I think my Dad wants to withhold food and water also, but I'd have to check to make sure. I do know that I have copies of their living will paperwork at home.

2Cor521

 

[OAG]

Thanks RIT (and others in the medical profession) for sharing. As you probably know I have two RN (one NP) Daughters and one Surgeon SIL - I don't know how they do it either. New life is always joyful - leaving is always tough.

 

[Rich_by_the_Bay]

75%? Oh dear. The spirit of what they want is to not waste a lot of money or hope or time if they're not going to recover.

Therein lies the rub. While no physician would ethically force treatment in a situation of utter futility, we are very, very bad at knowing who will be the 1 in 10 or one in 1000 who will make a meaningful recovery. Add to that the unknown quality of life after such a near-death expeirence, and you get real humble real fast.

 

[bbbamI]

My thanks as well to anyone in the medical profession. You give comfort not only to the patient, but also to the ones left behind.

 

[Puzzley]

Rich, my hat's off to you for sharing this experience. The situations this thread has generated are difficult life events. My mother is almost 98, in a nursing home, and has been demented for many years. She, along with my two sisters and I, many years ago did all the necessary paperwork to insure that she was DNR. This was her wish when she was still lucid, and we follow it. It's the best thing for her....

 

[SecondCor521]

Therein lies the rub. While no physician would ethically force treatment in a situation of utter futility, we are very, very bad at knowing who will be the 1 in 10 or one in 1000 who will make a meaningful recovery. Add to that the unknown quality of life after such a near-death expeirence, and you get real humble real fast.

Exactly. I think the best I can do is:

1. Review their living will and durable health care POA and then have discussions and Q&A sessions with Mom and Dad about what they want. (done)
2. If/when something happens, consult with the doctors and get the clearest and best diagnosis and best estimate of a prognosis.
3. Consult with my two sisters.
4. Make the best decision I can based on their document, their wishes, the doctors' information, and my sisters input.

I don't like that it's inexact and uncertain, but there doesn't seem to be any other option.

2Cor521

 

[Zoocat]

Therein lies the rub. While no physician would ethically force treatment in a situation of utter futility, we are very, very bad at knowing who will be the 1 in 10 or one in 1000 who will make a meaningful recovery. Add to that the unknown quality of life after such a near-death expeirence, and you get real humble real fast.

That's why this kind of decision should be shared between doctor and patient/patient's family. Certainly having a living will makes it easier. And if the patient is elderly, that makes the quality of life outcome easier to predict, doesn't it?

My father has a DNR order in his living will. He gave it to me about 5 years ago but I lost it when I moved after divorce. Thanks for this thread, I will make sure I get another copy. And I will probably make a living will for myself pretty soon. It's one of those documents that I really dislike thinking about.