End of Life Decisions

 

Originally broadcast October 9, 2009

KIM LAWTON, guest anchor: The president was on the road again this week trying to sell health care reform.  Meanwhile in Washington, behind-the-scenes negotiations continued over several potential stumbling blocks, including funding for abortion coverage. Another controversial question in the effort to create affordable health care is how treatment at the end of life might become more humane and less expensive.  Right now, in most states, when a dying patient can no longer communicate, doctors have no choice but to keep care going, even if it is painful for the patient, expensive, and unlikely to do any good. But is that necessarily the right thing to do?  Betty Rollin has our report.

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 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.

post02b-endoflifeDR. 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.

ROLLIN: 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, RNJill 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.

LAWTON: Shortly after we produced that story, Jill Steuer passed away.

  • Gail

    “I want the next four months to be as interesting as the last 57 years have been.”

    Those are inspirational words, I believe.

    Rest in peace, Ms. Steuer, and thank you for your example of courage.

    As a person active in my faith community, I wonder what role our community can play in encouraging these conversations among family members. Thank you for this report.

  • Judith B. Neale

    This was an excellent presentation. I have worked in End-of-Life issues for 30 years both from the professional side and the personal side. I was Executive Assistant to the Pennsylvania Attorney who helped to develop the Healthcare Directives and a member of the WHYY Caring Community Coalition that was funded by Robert Wood Johnson in 2000 to create of one the four of their Last Acts groups dealing with end of life.

    One minor adjustment to Detty Rollin’s good comment about everyone having the directives, it should be Durable Power of Attorney for Healthcare (you can have a general Durable Power of Attorney not necessarily specific to Health) and use Advance Directive/Living Will as this reference varies in some States.

    I look forward each Sunday to watching the Program as it is most informative.

  • Kelly Moore

    Fantastic segment! I work with a passionate team of people dedicated to improving the end-of-life experience for people and getting the message out that you do have the right to make your own healthcare decisions. Embark Health, Inc. is a company dedicated to improving the end-of-life experience for patients, families and caregivers by empowering them to make their healthcare choices for critical and end-of-life care enforceable and available if and when they may be needed. We encourage you to visit our website at http://www.embarkhealth.com/ads and look forward to more discussion on this very important issue.

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  • Vickie

    How I wish everyone could see this segment. Thank you for airing the story and the comments of Jill Steuer RN and Dr. Gordon. Theirs is from the perspective of so many of us who work in health care. Beautifully and succinctly done. Ironically, your show always captures my attention even though I don’t practice any particular religion.

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  • Josh

    End of life discussions are one of the pivotal issues that people are using to scare people away from voting for health reform. The idea that the government can put the kaibosh on you if you’re dying is scary, but the reality is that the level and standard of care is atrocious compared with our other first world friends and if we can’t get together to solve a problem like this, it doesn’t bode well for our capacity on the world stage.

    Josh

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