From Tuesday’s Globe and Mail
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May 19, 2009 at 9:23 AM EDT

We’re not very good at dying.

I suppose it makes sense. Death is taboo. We can’t foresee the future and who knows what will happen. It’s painful to think or talk about our own death, or the death of someone we love. For these reasons and many more, we tend to leave it to fate.

This avoidance was reflected in results of the continuing Coping with Cancer trial recently published in the Archives of Internal Medicine. A team of investigators, led by researchers at the Dana-Farber Cancer Institute in Boston, interviewed 603 patients with advanced cancer. They asked the patients, who had about “six months left to live,” whether their doctors had discussed their wishes for end-of-life care. Keep in mind this is at a famous specialist centre that often cares for people at the end of their lives. The majority – 69 per cent – said those conversations had not taken place.

There are many costs of not having this conversation. The most “expensive” part is that patients end up dying in a way that they would not have wished. For example, they may feel they are ready to die today, but are kept alive in an intensive-care unit for a week instead.

This was seen in the study because the absence of end-of-life conversations led to more physical distress in the final week of life, as reported by nurses and caregivers.

The second cost is more predictable. In the last week of life, those patients who had talked with their doctors wound up with medical bills that were on average 36 per cent lower than those of patients who did not have end-of-life conversations. This signals that they made a conscious effort to plan a good death. If we say nothing, we tend to get everything the hospital can give us.

Usually our prime directive in medicine is to ask for more: more tests, more imaging and more opinions. The son or daughter or doctor or nurse who arrives on the scene feels better when they’ve added rather than subtracted. Yet at the end of life, less is often more. There are many reasons why patients who have advanced illnesses receive inappropriate care, but most of them are rooted in a medical philosophy that is focused almost exclusively on curing illness and prolonging life, rather than on improving the quality of life and relieving suffering. After a long life, many prefer not to have a high-tech death at the hospital in June, but instead would like to die at home in May surrounded by loved ones.

A friend phoned the other day as she had been called to Ottawa to care for her mother, who has had Alzheimer’s disease for some time and was very ill with pneumonia. I asked if they had treated her with antibiotics. She thought for a second, as if absorbing the implications of this, and said she didn’t know. When she got back home, she called me and said that her mom had survived but that the family had mixed feelings since they believe she would not have wanted to live in her current state. She also told me of her sister’s revelation that the emergency room doctor had called and said, “We’ve seen your mom here a few times lately …,” but it was only in retrospect that she realized that she had been offered the option that her mother not be treated with antibiotics.

Herein lies the dichotomy, the decision to focus on reducing suffering is made only after life-prolonging treatment has been ineffectual and death is imminent. It’s very hard to switch gears – to let go of the rope.

It’s a lot easier when you have a clear sense that this is what the person would have wanted.

Acknowledging that it’s morbid, that things can change, and you reserve the right to change your mind, perhaps it’s time to look across the room at your loved one(s) and have a conversation about what a good death would look like to you. What would you want in certain scenarios? (What if I can’t talk or write or signal my thoughts? What if I become too sick to eat except through a tube? What if I am demented? Who is my proxy?) This conversation becomes more imperative if you are facing down a tough diagnosis.

Writing down your philosophy is best because informal discussions about these matters can lead to misinterpretation at the time of crisis. As Willie Molloy, a geriatrician and professor of medicine at McMaster University says in his book, Let Me Decide, “If we have stated our wishes clearly, doctors and family don’t have to second-guess what kind of treatment we would want.” You will receive the treatment you want. You take your family “off the hook.” We call this an advance directive.

Believe me, this is all harder than it sounds. Many doctors have told me that they didn’t understand why family members couldn’t withdraw aggressive care, yet when it came to their own parents they too were paralyzed.

Not all deaths are good and maybe they shouldn’t be. Death can be unfair and premature and some may simply side with Welsh poet Dylan Thomas and “rage against the dying of the light.” Contrary to popular mythology, families that are disconnected in life rarely find harmony in death.

As Jonathan Swift, the 18th-century satirist and essayist wrote, “May you live all the days of your life.” A good death is one that is pain free, dignified and on your own terms. It’s when you truly live all the days of your life.

Dr. Mike Evans is a family

physician, associate professor

and director of the Health Media & Innovation Lab at the Li Ka Shing Knowledge Institute of

St. Michael’s Hospital and the

University of Toronto.

No End in Site – Introduction

This will be the Salvo for an extensive description on the journey undertaken by me, William O’Brien of Wolfville Nova Scotia, formally from Ontario, on the path of dealing with metasticised prostate cancer.

The intiial diagnosis was determined in the fall of 2003 subsequent to a blood test which indicated a elevated PSA level of 55 and after a biopsy at the Valley Regional Hospital in Kentville, Nova Scotia it was determined that I had a tumor somewhere in the range of a 6.5 gleason rating and that a subsequent bone and cat scan indicated the tumour had metastisised out side the prostate showing up as small 2cm cancer in the lymph node.

Ruling out the options offered on a locally restricted cancer diagnoses I began a regimine that included daily drugs and an injection every three months to eliminate the development testosterone which in turn shrank my cancer tumor considerably to a point to where my PSA level reached an absolute 0.

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No End in Sight – Chapters

1. Preliminary lifestyle 1960 to 2000
2. Lifestyle in Eastern Canada to 2003
3. Diagnosis and treatment from 2003 to 2009
4. Lifestyle changes for 5 years
5. Diagnosis and treatment ongoing from 2009
6. Changes from May 2009 onward
7. Family influences and affects.
8. Changing the economics and career possibilities

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No End in Sight – Chapters

1. Preliminary lifestyle 1960 to 2000

Looking back on the past 40 years to find some reason to blame this disease on is natural. I was prepared to find fault, being sure I could find the culprit, with some influental factor that would have been the cause of my cancer, but the harder I looked and the more questions I asked the greater the distance came between problem and cause.

The first year I was just thankful to have interupted the spread of cancer cells to the more vulnerable parts of my body, like the bones and organs and a sort of victory was proclaimed as my libido waned and the bed sheets soaked up my oht flashes. No doubt to have arrested the cancer was a huge relief and my respect for the drug companies took a major swing upwards. This turn of tide was done without the usual inconveniences of incontinence, erectile failure and chemically burnt organs that are attributed to invasive surgery and brachitherapy but also without the potential permanence of “Goodbye Prostate Cancer”.

It is also fair to mention that at the same time as I was receiving the drugs I also was treated by a Naturopathic Doctor using basic supplements and exercises to compound my recovery. If my diagnosis of a PSA count had been only slightly above normal I believe I would have engaged with the holistic process with more gusto to see if under the direction of my Naturopath the nubers could have been stalled below 10. I had missed 3 years of rectal inspection which would have found an elevated PSA and would have then offered me more options in treatment.

In the second and third years of continuing injections and daily pills I began to think

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No End in Sight – Chapter 5

5. Diagnosis and treatment ongoing from May 15 2009

It should have come as no suprise that on my most recent visit to Dr. Wilke a PSA count of 17 had been reached since our decision to suspend the hormone treatment therapy in December of 2007. The count had been slowly creeeping up from .5 to 1.75 to 5.5 and then to where it is now after having at least a year and a half of no hot flashes, oversized breasts, shriveled privates or PSA numbers!

Knowing that this day would come and in discussion with the doctor we have begun the daily regimine of a hormone pill with an injection for time release every 3 months. The idea with the hormone therapy is to fool the pituitary gland into thinking that my body does not need any more testosterone and to quit making it. The lowering of testosterone is the only way to shrink the tumours that are encased within my prostate and which have unfortunately nestled themselves into my lymph nodes as well.

To find out exactly where we stand in relation to the regrowth of the tumors I will be getting a bone scan to see if any of the nasty Ccells are chewing on my bones and an MIR scan to find if there are any errant bits any larger that we already know about in the lymph nodes or any other mushy parts.

The therapy I am undertaking is the only procedure that has shown to be effective in retarding the growth of Prostate Cancer in Metatastic form, unlike conventional surgery or therapy which treats the occurance of cancer cells that have been encapsulated within the prostate itself and there fore would respond to selctive surgical intervention including chemotherapy

This little guy is looking for bugs.

Hi Friends,

It has been a while since I wrote a blog, so hang in there and I will let you know when something worthwhile pops out of my coconut.

Bill