Saturday, March 20, 2010

Pull the Plug - Now!

The voice on the phone is demanding, quavering, pleading; "Dr. deMaine you are going to be the attending Critical Care doctor when our mother is transferred to your hospital today. She needs to be taken off the respirator and allowed to die. We have been pleading with the doctors at the burn center, but they keep doing more procedures. We want her off life support as soon as she gets there."

I am a bit taken aback since I'd never heard of the patient, let alone that I am destined to be her doctor in the ICU. I tell the family to try to come to the hospital to meet with us today when the patient arrives.

After hanging up the phone, I receive the call from the transfer coordinator, "We have a patient in the burn unit who is 87 years old. She has 50% third degree burns and 20% second degree burns. There have been multiple grafts. The complications have been pneumonia, stroke, heart failure and adult respiratory distress syndrome. The house staff will fill you in. They think she should stay there but the family is very unhappy that the patient is suffering through all these treatments."

In thinking about this, I first reflect that it's not too uncommon that the family feels left out in critical care decision making. They sometimes don't understand that a sick relative may look awful, but still have a good chance of recovering. Lots of communication is needed, but the doctors often don't have the best skills in this area. It can be very hard to switch from a "curative mindset" to a "palliative mindset" for all involved.

I'm paged to the ICU when she arrives by a life-support transfer Medic One team. This unfortunate woman has now been on life support for one month. There are multiple burn grafts in place. She is unresponsive to verbal or physical stimulus. The blood pressure is marginal, kidney function poor, liver functions elevated, and chest x-ray diffusely abnormal. If this were a young patient, there might be some hope but this woman is going progressively downhill. It's a tough call. If the patient could talk to us, what would she want?

I meet with the family, the new RN team, and our social worker in the conference room. After introductions, I give them an outline of the process we'll use over the next half hour to go over their Mom's care. First we review all the medical facts and time-line of hospital care so far. Then I outline the options for further care including discontinuing care - and the benefits and burdens of each possibility. We discuss her daily life prior to the the fire. Her son and daughter, Jerome and Ada, describe her as a happy person yet very limited over the past few years due to arthritis. She was feeling isolated because all her contemporaries had died.

We then discuss her wishes for aggressive life support care. She has never signed a living will or executed a durable power of attorney for health care. Her husband is deceased, so under Washington State Law, the decision making authority rests with her two adult children who must agree. Both are adamant that Mom would never have wanted this kind of aggressive care. She has been ready to "pass on" for some time.

Jerome says, "It's bad enough to die once in a fire, but dying every day in the ICU is just too much!"

After nearly an hour of discussion, which includes the nurses and social worker, all agree that the most reasonable course of action is to remove the ventilator. I ask the family to step out of the room. Then I turn off the monitors in the patient's room, make sure the patient is still unconscious, turn off the ventilator and remove the endotracheal tube.

Jerome and Ada are at the bedside holding mom's hands as she exits from this world. There are tears of both sadness and joy. The nurses and social worker continue to be supportive and help the family with the arrangements that need to be made.

Comment: About 70% of all deaths in American ICU's occur by removing life support. Heroic attempts have been tried, but ultimately failed. Medicine is slowly facing the issue of futile and expensive care at the end of life - a time when patients, families and medical care givers often prolong care far beyond a reasonable limit.

The day after the patient's death, I got a call from the surgical resident in the burn unit, wanting to know about the patient's grafts and general status. I explained as gently as I could that we removed life support at the request of the family. The surgical resident wasn't happy.

Here's my encouragement with patients and families to help prevent confusion at the end:

1. Write your wishes down and share them with your loved ones and doctor. Execute a Living Will.
2. Appoint a trusted person who knows your heart as your Durable Power of Attorney for Health Care. Have it notarized.
3. Ask your state medical association about a physician who specializes in palliative care or in geriatrics.
4. If that is unsuccessful, contact Compassion and Choices for help in choosing a sympathetic doctor in your state at http://www.compassionandchoices.org/
5. Ask your state medical association if your state has a POLST form. This stands for Physicians Orders for Life Sustaining Treatment. It respects your wishes and is signed by both you and your doctor. The availability of this form varies state by state.

16 comments:

  1. I followed your link here from a NY Times article on Dr. Pardi. You should write a book about your experiences (or have you already?), I think it would do well.

    Perhaps you could send some of your blog postings to a literary agent. It seems like a marketable product, and furthermore, it would be helpful to so many Americans struggling with illness (their own, and their families) and what is involved in end of life care.

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  2. Just the kind of experience and advice I need from a physician. I have premature onset dementia; I'm 60. I don't want to lose my mind. It's OK to die, everybody does. But my healthy body will keep chugging along after my brain has deteriorated. I have decided to enjoy my Golden Year(s) right away. But how long do I have before I won't be able to execute my demise? Doctors here in my state don't want to deal with that AT ALL. Insight?

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  3. Thanks for suggesting that the blog stories might be material for a book. I'll give that some thought!

    In terms of my insights about how to communicate your wishes about your end of life care, I'd suggest the following:
    1. Write your wishes down and share them with your loved ones and doctor. Execute a Living Will.
    2. Appoint a trusted person who knows your heart as your Durable Power of Attorney for Health Care. Have it notarized.
    3. Ask your state medical association about a physician who specializes in palliative care or in geriatrics.
    4. If that is unsuccessful, contact Compassion and Choices for help in choosing a sympathetic doctor in your state at http://www.compassionandchoices.org/
    5. Ask your state medical association if your state has a POLST form. This stands for Physicians Orders for Life Sustaining Treatment. It respects your wishes and is signed by both you and your doctor. The availability of this form varies state by state. I certainly wish you well in what must be a very difficult time.

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    1. Jean Manly, MSW, LSWAugust 30, 2015 at 4:35 PM

      As a licensed social worker & MSW, I appreciate your adding the POLST option in your suggestions for end of life care options. FYI, Hawaii (among other states) has recently passed a law allowing nurse practitioners and APRNs to execute POLST orders, and the law here is called Providers' Orders for Life Sustaining Treatment.

      However, I hope you will explain in more detail the differences between a POLST and advance care directives, as they are quite different. POLST are most often written when the patient is approaching the end of life, and is a way of avoiding all (or specific) heroic measures by first responders, with the form readily available and posted either at bedside or in a prominent location such as the refrigerator. In addition, some states have set up databases accessible from a variety of platforms (smartphones, computers, EHR) so that a patient's status can be ascertained while first responders are enroute to the patient's location.

      Advance care directives apply to all of us, as does the Durable Power of Attorney for Health Care. Having the latter two in place does not remove the desirability of having a POLST in place.

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    2. Thanks for the info on the POLST development in Hawaii. More and more states are on-board. I've written several posts on the blog about the POLST and agree with all your comments. See https://www.blogger.com/blogger.g?blogID=6173095375385680490#editor/target=post;postID=785938694286924103;onPublishedMenu=posts;onClosedMenu=posts;postNum=18;src=postname.

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  4. I also came here to your blog from the NYT comment. I also think your writing and experiences would make a useful and interesting book.

    My mother-in-law filled out a do not resuscitate form, yet when she had a heart attack at 96, the medics tried to resuscitate her. She was at a senior living home, her form was there too, but the medics paid no attention.

    Despite the medics efforts (I call them medics, they were with the ambulance that came to the home)..she died.

    My husband and I were VERY upset that her wishes had been ignored. We were told she needed to renew such a statement every six months to "keep it current."

    I don't know about you, but I think that's a crock.

    (this was in the SF Bay Area, California, just a few years ago).

    Thanks again for your interesting blog.
    sunny lockwood
    sunnylockwood.com

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  5. Sunny, what a sad story - to have unwanted CPR even when the necessary forms had been completed. I don't know California law, but I doubt the "every 6 month renewal requirement". I wrote about a similar case in my blog entry from September 2009. It's about the POLST form which I believe is gaining acceptance in California - see http://www.ohsu.edu/polst/programs/documents/CAProgramDescription.pdf

    I may look into self publishing my blogs one of these days - particularly if they can be of some use and comfort for those facing end of life situations. Or I could try, as suggested, a literary agent. I've published medical articles in journals but not books - so any advice would be appreciated.

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  6. My mother with an early-onset dementia (not Alzheimer's) suffered recurring urinary tract infections over the course of her illness, the final one ending her life.

    In my health care POA, I've decided to prohibit the administration of any antibiotic if I have been diagnosed with dementia and am incapacitated.

    I have no desire to live as she did the better part of a decade either in a wheelchair or bed-bound, completely unresponsive, when I can allow the _first_ infection I get to free me from the living death of dementia.

    There's a reason we once called pneumonia the old man's friend.

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  7. You say "decision making authority rests with her two adult children who must agree".
    So just how did the previous facility do all these procedures against the children's wishes?

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  8. I'm not sure of all the details of how the previous facility interacted with the family. But there is a certain "technology driver"(when you go into a barbershop you're very likely to get a haircut) once you are an inpatient in a high tech environment. Things like grafts, antibiotics, ventilators, nutrition, fluids, etc. are all "routine" in burn care. At times the focus is on the myriad of life saving details and contact with the family isn't really adequate. The adult children felt they weren't being listened to, so demanded transferring to our hospital. I've found that in end-of-life care that sometimes the family is ahead of the medical/surgical teams in accepting the reality of impending death. Each family though has unique dynamics, and the opposite can certainly occur.

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  9. If that's the wishes of the patient and the family then it's the right thing to do.

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  10. I've never lost a family member (and hopefully will not have to) this way, but I definitely empathize with the family members. After having to put down my pet, there was an enormous relief. Once you see something that you love suffering on a daily basis, it's easy to see why you would choose quick death over prolonged death. I think they did the right thing considering the circumstances. I hope the family members have found peace with their decision and loss.

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  11. Hello,

    I ended up on your post while searching the internet today after having "the talk" with my father's doctors this morning. My father had a stroke about a month ago. He was in the hospital and okay the first two days after the stroke. On the 2nd night he went to sleep and has not yet woken back up. The doctors have told us that he has three hemerages; 1 in the back and 2 in the front. For the past month I have been waiting patiently, sometimes not so patient... being hopeful. Sadly each day I see and hear about more complications. More procedures and more tubes and pricks. Today I spoke with a Neurologist who explained that she does not feel that he will ever wake up and if does, he will be in vegetative state; unaware of who we are and his surrounding. Now they have left me with the "should we continue treatment"... I am broken on the inside, lost, sad and confused. At 30 years old I am still a daddy's girl. I just cannot imagine life without his hugs... I just feel in my heart that he would not want us to keep him around just for our personal needs and wants. I feel that he is ready to clock out. I just wish this could be easier. Anyways, if you read this, I thank you for taking the time too. I ended up on your post to try to find some perspective from others who may have the same heart strings being plucked or those who have the job of doing the plucking. I thank you for the space to vent.

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  12. I'm going through the exact same thing! I've been sleeping, eating and crying in this ICU. I'm at such a loss!!!

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  13. On June 12th this year I removed my love from life-support. Her last ten years had been very bad. She was in heart-failure, had Pulmonary Hypertension, and was in end-stage kidney failure.
    Last year she went through a crisis and ended up in CCU on a ventilator. Her health after that just continued to decline and she told me under no circumstances was I to allow her to be on the vent again. This May she went back in and I told her Drs "No vent". My wife was ready to die. She had told me, but here's the thing, my wife ALWAYS CAME BACK. The woman survived everything. Including Leukemia in the late 70's when the radiated the Hell out of her to two bouts of breast cancer. She this time even seemed for a day like she was coming back again. But she ended up in CCU again and went downhill from there.
    Her kidneys shut down three days before she died and at this point had brain damage from the build-up of carbolic acid in her system. The BiPAP was breathing for her and she still struggled for her breath.
    I knew it was what she wanted and I loved her too much to let her suffer. Still the guilt I feel is tremendous. I wonder if I did everything right? Would the doctors have told me it was "too soon" to take her off the BiPap? So many questions...
    Thank you Dr. for a great article and thank you for reading this.

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    1. Thanks so much for sharing your story. These situations are so stressful in that we want to keep our loved ones here with us. You did the right thing by honoring her wishes and it was a blessing she could be clear about what she did and didn't want. What you did is very difficult, yet wonderful. You allowed her suffering to end - and there will be an end for all of us. BiPAP is some support for breathing, but there's no real benefit in using it when all the organs are failing. I hope that any sense of guilt may ease in knowing that you absolutely made the right decision. May we all have an advocate as strong as you are.

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