End of Life Decisions

 

FAMILY MEMBER: She’s been fighting cancer for five years, twice. She has emphysema of the lungs real bad. It’s gotten worse, they said, since she’s been in here, and right now she is fighting a bad stroke. They are not sure, but they are saying something like it could affect her left side and maybe her brain.

BETTY ROLLIN, correspondent: Did she leave any instructions about what to do?

FAMILY MEMBER: No, she did not.

ROLLIN: And that’s a major problem, says Dr. Jeff Gordon, an internist at Grant Medical Center in Columbus, Ohio. Dr. Gordon has had dying patients who have not made their wishes known and haven’t realized that some extreme measures are almost always futile.

post02c-endoflifeDR. JEFF GORDON (Grant Medical Center): Most people think, that is for elderly people especially, that heroic measures like CPR and ventilator support is really effective, and the truth is, in older people with complicated medical problems, it just doesn’t work effectively, so the bottom line is people suffer needlessly at the end of life.

Ventilator–there is a plastic tube that goes through the mouth into the windpipe, and just imagine the gagging kind of feeling. Now we give high levels of sedation to inhibit that, but that alone, now think of yourself, these people typically have to be restrained so that they don’t just reflexively reach up and pull that tube out, and so they have their arms restrained. They can’t move freely, and think of yourself being on your back restrained, just the muscle aches and pains that you would develop.

ROLLIN: Dr. Gordon points out that sometimes aggressive treatment is a good idea.

DR. GORDON: Intensive care and heroic measures are awesome when they are used in the right people. The right people typically are younger people that have a chance of survival and having a good outcome.

ROLLIN: Dr. Philip Hawley, who is director of the intensive care unit, says the state mandate is to keep life going no matter the cost, so although doctors think their patients should be allowed to die peacefully, their hands are tied by custom and law.

Dr. Philip HawleyDR. PHILIP HAWLEY (Grant Medical Center). We have people who are terminal on aggressive life support measures. Clearly they are not going to survive. We are spending all this time and money taking care of them. They are suffering, and it’s completely inappropriate.

DR. GORDON: What people need to do is talk about this with their family, with their physician, in advance. If they get a life-threatening illness, a lot of times they won’t be able to. Maybe they won’t be coherent, or they’ll be on a life-support machine. They can’t express their wishes, then they put their family in a bind, so they feel guilty, they don’t know for sure, and then what often happens is the sort of default is, well, let’s do everything, as much as possible.

ROLLIN: And sometimes families disagree about what to do. It’s hard for some to let go, which complicates things further.

DR. HAWLEY: If we could get families to deal with this we would not have this problem. We feel we as physicians should be able to step in and say we’ve got to stop the madness.

DR. GORDON (speaking at church service): Lord, help us have perspective. That’s what changes lives. That’s what gives us hope.

ROLLIN: Dr. Gordon, who is also a nondenominational pastor, was surprised to find that patients who are religious often want more aggressive treatment at the end of life than others.

DR. GORDON: I have even encountered people that are people of faith, and they are, what I think, pursuing futile-type measures, and they say well, we are going to let God have his way here, and I try as gently as possible to say we are not really letting God have his way. We are forcing the issue here.

Dr. Jeff Gordon, Grant Medical Center(speaking to patient): Has anyone talked to you about this?

PATIENT: Oh, no.

DR. GORDON: No, no. It’s a topic that doesn’t get talked about.

ROLLIN: Dr. Gordon practices what he preaches by getting patients, as well as their families, to talk about what they want at the end of life while they still can, and he tries to make both patients and families aware of realistic rates of recovery.

DR. GORDON (speaking to patient): I just want you to understand is that those kind of things like CPR and breathing machines in somebody that’s got the problems that you have are not very effective. You need to decide whether that is something you would want or not, but you need to have all the facts about it, too.

ROLLIN: One of the reasons conversations like this rarely happen between patients and physicians, says Dr. Gordon, is that physicians are paid to treat, not to talk, which is not to say that some don’t talk anyway.

DR. GORDON: The person that needs to have this conversation is the primary care physician. They are going to have to call family members, they are going to have to gather these people, and besides that it’s a very difficult conversation, and so we are underpaying them. They are going to have to make a financial sacrifice to have this discussion, and then we wonder why it’s not happening.

Jill Steuer, RNROLLIN: There are three things people can do to make their end-of-life wishes clear: Sign a durable power-of-attorney naming a person to make decisions if they are unable; sign a living will which is about long-term life-sustaining treatments; and deal with the DNR question—whether if your heart stops you want to be resuscitated or not.

Jill Steuer, who has metastatic breast cancer and has been given four months to live, has decided to stop any kind of treatment and receive hospice care.

JILL STEUER, RN: I’ve been through all the chemotherapy, and there is no chemotherapy to help me anymore. I don’t want to be stuck. I don’t want to have any extra medications. I want to just go peacefully. The only medications I want are going to be the ones that are going to comfort me. That’s all I want.

ROLLIN: Jill Steuer is a nurse and researcher at Grant Hospital.

JILL STEUER: I’ve seen patients who have died horrible deaths, where their families wanted everything, the doctors wanted everything, but it was not to be, and that scared me. I’m not sure they realize that it’s okay to say “I’ve had enough.” Even now people will stop me in the hallway and they’ll say keep up the good fight, keep up the good fight, and I think some people are afraid that they are going to disappoint others if they just say let’s have nature take its course. I’m putting up a good fight, but my goal is not to live a long and painful year or two. I would much rather say at this point in time I want the next four months to be as interesting as the last 57 years have been.

For Religion & Ethics NewsWeekly, I’m Betty Rollin in Columbus, Ohio.

  • bill mckahan

    wow! The waste and suffering! What could we do with the money spent on end of life?!?!?

    You think we can provide TB medicine or Diabetes medicine for the folks that need it?

  • Patricia Chute

    This is a fine, and very important interview. We must overcome the obsticles to a peaceful death, and interviews like this can help. Many thanks

  • Amy Dawson

    Dr. Gordon makes great points and I encourage people to read his book, A Death Prolonged. He provides excellent information in a quick and easy to read format. Drs. Gordon and Hawley have excellent perspectives, and Jill Steuer is an amazing nurse and friend. Thanks, PBS, for covering an issue that needs to be brought to the forefront – I hope this encourages more people to having this important conversation.

  • Louise Anne Guerrant

    Thanks SO for the PBS Religion & Ethics end of life issues discussion (& NO mention of death panels). Doctors told my parents when I was born in 1951 that I would die. I have had a lifetime of medical issues, near deaths, etc. Still, I am joyous / grateful to soon be 58!!!

    I read Betty Rollin’s First, You Cry years ago.

  • Gail Rubin

    My 82-year-old father-in-law died this year in April, and even with advance medical directives in place, real life gets messy. After seven weeks of hospitalization between acute care and rehabilitation, he died peacefully on palliative care in the hospital. But there was drama in the last days between family members over continuing to treat the pneumonia and tube feeding. Families need to be able to talk to each other as well as the doctors involved with a loved one’s care.

    I write a blog called The Family Plot: Funeral Planning for those Who Don’t Plan to Die. You can read my father-in-law’s story at http://thefamilyplot.wordpress.com/2009/08/19/death-panels-or-prudent-planning/. See how important it is to speak and listen with the head as well as the heart.

  • rhonda holley

    I agree with Dr jeff Gordon..

  • John D Chovan PhD CNP

    Physicians like Jeff Gordon are becoming less rare. But more physicians need to understand and be able to communicate these views to help people live the best lives they can live… even up to the end. In addition to individual physicians, palliative care teams and hospice services — that include nurses, physicians, advanced practice nurses, social workers, counselors, and chaplains — can provide comfort to patients and their families while these dying people live their lives to the end. Also, we Americans need to rethink our antiquated views about death and dying, and have these courageous conversations about the wishes of our loved ones, especially before we have to answer for them. Thank you for opening the door another bit towards ensuring that we do not let our loved ones live the end of their lives without dignity and peace.

  • Jessie Wheeler

    A well done program and much needed. Thank you for presenting such an important subject in such a caring way

  • Charlette Allred

    An excellent video and a story that must be told. Such tender decisions need to be made by patient, family and physician at the bedside, not in a court of law which is where such decisions are often made. Physicians need not fear discussing end-of-life issues with patients and families; we want our physicians to explore these issues with us. Doing so will result in better and less expensive health care.

  • Rachelle Mitchell

    Jeff Gordon was my family physician years ago and is now my pastor. I agree with the earlier comment that physicans like Jeff are rare, he truly cares about what is best for the person and their family, not the mighty dollar. Seeing the time, energy, and money Jeff devotes to serving God and others clearly shows that serving God far outweighs anything you could buy. I am so thankful he is getting families to talk about this important and touchy subject while they still can. When my Grandma had a heart attack two years ago and the family had to decide whether or not to prolong her life with machines, luckily her and my Grandpa had already discussed it and decided it was no way to live. I felt so much better knowing my Grandma wasn’t suffering needlessly.

  • Beth Coolidge

    Such an important issue-We need more programs like this one. Thank you Betty Rollin.

  • Sheila Tobias

    How much does fear of liability (even criminal liability) enter into a physician’s calculus as to whether to advise a family about end-of-life options? And what would it take to remove that liability?

  • Mark Glenn

    Dr. Hawley “We feel we as physicians should be able to step in and say we’ve got to stop the madness”. While I agree with Dr. Gordon, this quote by Dr. Hawley scares me. There has to be a balance between letting families play God and doctors playing God. Getting people to do advanced planning seems tome to be the best we can do.

  • glenn ott

    I read this article because our family is going through end of life decisions for my father-in-law now.

    The medical doctors have provided their best medical advise to the family and have also searched their souls and compassionately shared their personal thoughts if this was their father.

    My father-in-law has a living will that we will honor, but that still does not take the weight off these decisions. This ultimately is personal family decision that can only be made by each family. I don’t see a “one size fits all” or sociatal mandated fits in these cases.

    I was personally revolted and saddened by Bill Machan’s comments:
    “bill mckahan Says:

    wow! The waste and suffering! What could we do with the money spent on end of life?!?!?

    You think we can provide TB medicine or Diabetes medicine for the folks that need it?”

    I am a proponent for life and don’t see all suffering in it self is a reason to end life. There have been many who have made much of their lives in spite of their suffering.

    My larger concern is the implication that we as a society should determine who has a right to life and that the financial considerations alone guide our decisions. Who else in our society would we deem “wastefully using resources” that should be used elsewhere? This is one door I do not want to open.

  • R.J.Rippin

    I am 83yrs of age and have studied this issue quite thoroughly and feel this particular coverage is excellent!

  • Michael P

    The lawyers screwed this up along with a lot of other things but this is one of the biggest. The battling that goes on amongst family members when end of life directives are ignored isn’t fair to the doctors or the taxpayers yet they are the ones left dealing with this lack of foresight. And BTW, I couldn’t agree with Dr. Gordon and Dr. Hawley more. Breathing tubes and CPR on 80 something year olds and/or the terminally ill have nothing to do with “gods hands”. Lastly, God bless you Jill Steuer. You have true faith and belief.

  • mary A wohlford

    I am 85 yrs old RETIRED NURSE and have a tattoo on my chest(since 2005) stating”DO NOT RESUSITUTE!”!
    If the LEGAL SYSTEM was not too eager to sue- the MEDICAL SYSTEM would honor our wishes -at a less fInancial burden. bUT THERE IS ALSO THE “SLIPPERY SLOP(Kavorkian idea) that must be watched!
    I BELIEVE IN LIFE FROM CONCEPTION TO NATURAL DEATH!