When there’s no cure, what’s the best treatment?

by Madeleine Kolb

Is there any question more anxiety-provoking, more terrifying, more contentious than what kind of medical care a sick person should have when the possibility of a cure is zero?

Two options

At one extreme is the full-throttle option–hit her with the complete arsenal of medical weapons available even though none will cure her. At the other extreme, provide palliative care, including pain medication, to keep her as comfortable as possible and relieve her pain.

These days, the full-throttle option is far more common, more conventional. Not because it cures people, but because many doctors see it as their mission or duty to keep even terminally-ill patients alive as long as possible, many family members demand it, and many patients don’t know that they have options.

Are we talking about rationing health care here?

 So in this atmosphere, it’s been most illuminating and inspirational to see a post on the subject by health care professional Amy Berman, recently diagnosed with Stage IV inflammatory breast cancer.  Amy writes personally and so powerfully about her recent eye-opening journey through the U.S. health care system.

Jill’s story

Amy Berman’s words made me think of Jill Byington, a wonderful woman I worked with in Seattle. In June or July, 2009, Jill was diagnosed with metastatic Stage IV triple negative breast cancer. She was a terrific writer and during her treatment, she blogged about her illness and other matters.

Jill died on December 8, 2010. Several months before that, she wrote:

You know, cancer has never really made me feel sick. Chemotherapy has, but I’ve never had symptoms from the cancer. Maybe if I let it grow without removing it through surgery or radiation I’d have symptoms, and maybe if it were more advanced…. but then, how more advanced does cancer get than “terminal”? Chemotherapy has, in fact, made me want to give up and die many times. Cancer hasn’t.

I’ve mentioned to my doctor and a few of you more than once that I really don’t see the point in going through 24 months of torturous treatment to buy a statistical five more months of life. What is the point of being completely miserable for 29 months total? Why not have 24 months of relative peace and comfort and go to heaven 5 months sooner?

Patient-centered treatment

Both these woman are part of a powerful and growing movement toward patient-centered treatment, meaning treatment that’s chosen by an individual patient as right for him or her. Treatment that may allow her to live out the time remaining in relative peace and comfort. Perhaps that’s the best treatment of all when there’s no possibility of a cure.

What kind of care would you want for yourself or a loved one, if there were no cure?

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{ 6 comments… read them below or add one }

1 givejonadollar January 23, 2011 at 1:32 pm

I think the best cure is to be honest about the situation. We all die. That’s a fact. Treasuring those last moments and putting things in perspective should be important.
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2 Madeleine Kolb January 23, 2011 at 2:49 pm

It’s hard to face the reality that we will all die. Perhaps aggressive treatment can lengthen a life, but there is no certainty that it will. What seems to be certain is that continuing painful, debilitating treatment at the end of life comes at an extraordinary cost emotionally and spirtually. Is that what we want for ourselves or for those we love?

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3 Lynne Spreen January 24, 2011 at 4:37 pm

A friend lost his wife to the type of brain cancer that took Teddy Kennedy. In spite of the fact that the best prognosis was given as 14 months, and in spite of the fact that with all TK’s wealth, power, and access to the very best health care, he got no more than that, my friend’s wife spent that entire 14 months being tortured with “life-extending” chemistry, 14 months that could have been gentler. The doctors could have shown some compassionate leadership in this situation, and everyone would have had less trauma, including my friend and his late wife.

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4 Madeleine Kolb January 24, 2011 at 8:02 pm

I have a feeling that it may be easier to bring about a shift toward palliative care in patients with incurable diseases than in the doctors who treat them. As patients share their stories, perhaps we’ll all begin to see that we have options, and doctors will begin to question whether it’s good medicine to torture patients with chemotherapy and other treatment when there’s no chance to cure the patient or even to extend his or her life.

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5 Lauren November 14, 2012 at 9:58 am

This is the ’800 lb gorilla in the room’ of health care reform. Not only is that care the equivalent of torture, it’s hideously expensive. There’s cancer insurance out there, and people should avail themselves of it if they want to endure the ‘prolongation of dying’ that has become the norm. Otherwise, counseling and assurance that they won’t be left to perish in excruciating pain, is all that should be guaranteed to people who face a terminal prognosis – especially if they’ve lived an unhealthy lifestyle. In case you think I’m hard hearted, please understand I’m just realistic. I choose to eat more sugar than I need, red meat catches in my teeth so I eat less of it, I have a dog so I’ll walk a bit each day, and I’ve never felt I’m entitled to the ‘taxpayer’ keeping me alive. All I want is the kind of basic medical care that will keep my quality of life good. I’ve never witnessed chemotherapy and radiation providing that for a Stage 3 or 4 cancer. Never.

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6 Madeleine Kolb November 14, 2012 at 2:17 pm

Clearly, end-of-life care is one of the elephants (or 800-pound gorillas) in the room in terms of health-care. I believe that palliative care to control pain is far more humane than treatments which not only may not help but also may leave a person even more incapacitated and in greater pain.

I don’t agree, however, with the idea that we should consider whether a person has “lived an unhealthy lifestyle.” Who’s to judge? For example, Type 2 diabetes is often attributed to an unhealthy lifestle because being sedentary and being obese are two of the risk factors. There are other risk factors, however, such as belonging to certain ethnic groups or (for a woman) having had gestational diabetes when pregnant.

In any case, judging doesn’t help anyone. What will help is experience with alternatives to today’s wildly expensive treatment at the end of life.

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