End stage colon cancer becomes even more tragic without hospice

Mike was a runner, outdoors-man, and fitness nut. This was not so much as for health reasons as for “feeling good”, but he did hope that it would help him avoid illness. It was worrisome when he started with some belly cramping and noticed some blood streaks in his stools. It took about a month until he could be scheduled for a colonoscopy. The news was shocking. “There’s a cancer in the bowel, and you need an abdominal CT scan ASAP.” The scan brought even more serious news, “Mike, your cancer has spread to the lymph nodes, the liver, and to the lungs. It’s an advanced cancer – State IV.”

Jan was with Mike for this conversation. It was like a ringing of disbelief in her ears. “Am I really hearing this? Can it be, he’s only 53? Is there a mistake? Will he suffer? Is it terminal and, if so, how long does he have?”

Mike had a degree in mathematics, then a PhD on the way to becoming a college professor. He was analytical. Things needed to make sense. There must be a way to deal with this. Jan was much the same having a graduate degree in engineering which occupied half of her life. The other was the devoted rearing of their seven children, and now their first grandchild. Life seemed to be so good. How could this be happening?

Both Mike and Jan immediately got on their phone to academic physician friends around the country and also scoured the internet sites on colon cancer treatments. The initial findings were pretty grim. The median survival is about two years after diagnosis. But the doctor friends had sources for expert care.

Their GI specialist referred them to oncology for consultation in Seattle. “Mike and Jan, there’s good reason to use chemotherapy to decrease the size of the tumor mass in order to prevent possible bowel obstruction or other complications”. Mike agreed and chemo was started. The unfortunate side effects of weakness, nausea and loss of appetite followed. They became discouraged.

One of their physician contacts felt they might benefit from a more holistic approach from a specialized center in the southwest. This holistic center offered tailored intravenous vitamins, nutritional supplements, massage, homeopathy, and tai chi in coordination with the standard chemotherapy treatments.

Multiple CT scans, blood tests, followed at the southwest cancer center. Mike and Jan were reassured that stage IV colon cancer is not a terminal disease with these “specialized tailored cancer treatments.”

The tumor regressed but did not resolve, so another referral was made to a west coast cancer surgeon who agreed to try surgery to “debulk” the tumor, remove part of the colon and part of the liver. This surgery was complicated by a blood clot in the left leg. This was further complicated by part of the clot breaking off and traveling to the lungs. This required blood thinners, several days in the hospital and placement of a filter in the inferior vena cava to prevent further clots from traveling to the lungs.

Standard treatment options had pretty much been exhausted yet the tumors were enlarging. A physician friend sent Mike to a research scientist who was aware of drugs “in the pipeline” for cancer treatment, but not available in the USA. Mike and Jan traveled out of the country to receive two drugs, one of which was injected directly into the tumors. These “off-label” treatments caused chills, pain, and weakness, but a transient sense of euphoria.

Mike was keeping tabs on all of this given his background in numbers. His insurance had only partly covered his costs. The trips to the country-wide treatment centers, the off-shore drugs and alternative doctors had cost $160,000. The insurance company had paid an additional $290,000 for all of his cancer treatments, but denied some coverage. This and his co-pays equaled $70,000. Thus the total bills were at about a half a million dollars.

But costs really weren’t the issue for Mike and Jan. They had been told at holistic treatment centers that his cancer was curable if only the right treatments could be opted for. The fight, prayers, hopes, and emotional ups and downs continued with Mike, Jan, children and close friends. There were tears, hugs, emails, and letters which brought the comfort to all. Well meaning folks sent them promises of yet other cancer centers, breakthrough treatments, and other alternative treatments. It seemed that there was always some hope out there if only they could get to the right person.

The children had been bewildered but supportive, loving and good caregivers. They were in Mike and Jan’s home at the end, which came swiftly. Mike had lost a total of 50 pounds, was jaundiced, and not eating. Hospice had not been involved because it was a situation where full curative attempts were continued until the end.

Mike awoke the final morning in severe pain. His chest was heaving and his breathing hurt. Most of the family was nearby and could be at the bedside at the end. A last minute call to Hospice and the doctor was made. The doctor told them Mike was dying, likely in a matter of hours. Hospice never made it in time. Mike slipped into coma and died 30 minutes later at home with his loved ones holding him.

Comment: I’ll leave it up to the reader as to whether Mike got “good care”. His loving wife and family were very important in his overall care and support. To me though, the problem was one of a wish for a miracle fed by less than honest messages from some doctors. The family obviously wanted to hear good news and took the promises made at some centers to heart. I don’t fault patients wanting second or third opinions, but a quest for cure sometimes knows no bounds. I once had a patient with inoperable cancer go to a third world country for “bloodless surgery.” They came back with photographs of the “surgery” and the organs removed. Of course the patient had no scar, but that didn’t stop the patient from accepting the miracle produced by the slight-of-hand practitioners. Some miraculous cancer treatments have turned out to be a normal body substance like creatinine. Cortisone, which gives short term euphoria, is also in many off-shore “alternative cures.”

Mike’s story isn’t really unusual. We want the best for ourselves and are willing to pay. Our society expends huge sums on rather futile care. We ration our resources on ability to pay rather than need for care. Is it rational to do so? Did Mike’s care really become futile at some point? At what point should his physician friends have lovingly but strongly advised hospice care? Mike actually lived only 15 months after diagnosis rather than the median of 24 (new chemotherapy and immunotherapy has lengthened the median survival up to 29 months with about 9% of the patients living for 5+ years with stage 4 colon cancer). Did any of the treatments actually speed up his demise? Was his quality of remaining life really benefited? I think Mike’s case shows us how hard it is to switch from a curative mindset to a palliative/supportive mindset. It also shows why hospice is called in so late (or not at all) in many situations.

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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  • http://makethislookawesome.blogspot.com/ PamC

    “a quest for a cure may know no bounds” – isn’t that why we have a field of medicine in the first place?

    Sometimes we are in “here there be dragons land.” But most doctors aren’t willing to say, “I don’t know. We just don’t know about this stuff. Medicine has its limits.” 

    In your article, they only went to pseudo science after all normal medical options had failed. The reason why we go hunting for these cures is because when a doctor can do no more, they’ll just turn their back on a patient, rather than giving them any direction. But there are all sorts of patient websites and support groups for all these ailments where patients can keep up-to-date on information regarding their disease. Right now, however, it’s all grass roots. It’s built by patients. There’s no oversight by doctors. So people will post hair-brained ideas, and there’s no one there to tell them it’s bad, unsafe, or an outright scam. 

    There also needs to be some sort of transition from the doctors office, to a management process, if there is no possible cure. Too often patients are just sent away after nothing more can be done. But no one talks about how to tough it out until we can find a cure. No one talks about how to keep going anyway.Doctors don’t even consider it their problem. “You’ll learn to live with it.” Sure. And through trial and error I could learn to drive a car too, but without instruction, I’m likely to make a lot of very destructive mistakes, possibly deadly ones.

    And you’re surprised when patients end up acting this way? They’re desperate for a direction, something they can do and feel constructive towards their disease, rather than just a victim of it. We need to be given a plan for the future, rather than a pat on the head and “you’ll get by eventually.” 

    If you want your patients to act better, show them how. Don’t just push them off a cliff and hope they’ll learn to fly before hitting the ground.

  • http://twitter.com/threeasterisks Colleen Decker

    I think it depends on your perspective. And hindsight.

    This is the second story I read about colon cancer today – here is the first: http://www.nomeatathlete.com/carlos/

    In that story, the patient also refuses palliative care because he is determined to fight his cancer. A year later, he is still alive, and is happy he persevered through the anorexia, pain, and nausea. Had he died, I’m sure the story would have complained about doctors not forcing hospice care on him.

    • James deMaine

       Thanks Colleen, I agree that there is an issue of perspective.  Physicians, in general, try to collaborate with patients in coming up with a therapeutic plan.  Wise MD’s will never take away hope.  There’s a movement in medicine to conjoin curative and palliative treatments so that’s it’s not “either/or”.  The palliative team can really focus on the symptoms of the cancer/treatments while the oncologists continue to focus on curative attempts.  Even with the most successful treatments 91% of the patients will die within five years.  One MD on hospice said, “to die without hospice is like having surgery without anesthesia.”  So our path towards the end needs to be full of hope and potential curative treatments, but there comes a time when the palliative/hospice team become angels of mercy at the end (a logical progression rather than being “forced” into hospice).

  • okulus

    Seven children and a grandchild, and only 53; he had a reason to fight, even to the end. To tell someone even with a very poor prognosis to forget further treatment and to take only hospice is forgetting the whole picture, and what you should expect of a 53 year old with possibly a not fully grown family and a 75 year old are very different things. Hospice is saying you don’t expect and are no longer trying for cure, not just that you want comfort care. That is a lot to expect.

  • http://twitter.com/hvto Robin Watts

    The problem with referring to hospice is the old perception of “giving up”.  Studies have proven a longer life span with hospice vs treatments when those treatments are for comfort rather than cure.  Why do we prolong suffering?  Because we want our loved ones to remain with us for as long as possible and know we did not stop trying.  It is a fine line to cross when deciding to forgo further treatments.  Family and friends may not understand.  I knew a man who made this choice and he did not spend his last days in surgery or unknown outcomes surgeries. He chose to take trips with his wife, spend time with kids and grandkids, reviewing the importance of lessons learned and dreams realized or to be left for the next generation to fulfill.

    It has to be about the patient.  Many seek painful and intolerable plans of care in order to please a spouse or children.  As much as I advocate hospice, I have given in to family members who said “not hospice, now now” knowing that their suffering could have been relieved and quality of life given new definition.

    How selfish we become with the life of someone for whom we care so deeply. 

    Hospice discharges many patients who defeat the norms and triumph over disease trajectories.  The sad truth is that as one part of our body begins to fail, the reparation results in some other part becoming affected either by the same or different disease. 

    Hospice finds a way to deal with the physical symptoms and it is their expertise.  It is easy to forget that the spiritual and emotional services offered by hospice are as effective in comfort as a lot of pharmacological approaches.  Have you ever noticed how a person’s pain can subside with the visit of a few friends?  It doesn’t always happen but when it does, it makes you realize how important love and the intention of healing play a role in every life.

    I am sad to hear of so many who think hospice is the end.  It is truly the beginning of discovering the priorities of living.