Issue 39 / 14 October 2013

NOT long ago, I was asked to see a woman in her early 50s who had been diagnosed with advanced and incurable lung cancer.

She had been offered chemotherapy that might have prolonged her life for a time, perhaps even a year. This treatment would probably have caused her some unpleasant side effects and possibly made her very ill indeed.

After careful thought, she decided not to accept the offer of treatment. Her wish was to spend some time at home with her family and then to enter a hospice for palliative care until she died.

With her disease untreated, her life expectancy was probably only a few weeks, maybe months.

When I spoke with her she was calm and peaceful. She was able to discuss her wishes openly and freely. She displayed no obvious distress beyond understandable and appropriate sadness at leaving her family and concern for their future wellbeing, although she added that she knew they would be OK.

A close relative had died peacefully in the local palliative care centre and she believed that her death would follow the same pattern. We were all soothed by her serenity and acceptance.

Several weeks later, she was dead. She spent most of her time at home but was admitted to hospital for the last few days of her life. She had remained peaceful, dignified and without fear throughout.

In my work as a palliative care doctor I have spoken with thousands of people who know they will die in the near future.

When asked if they are worried about or afraid of anything, many say: “Dying”.

I commonly respond with: “Do you mean being there, or getting there?”

Although this question may seem a bit direct, patients are not upset, perhaps because it allows them to explore and address these issues for themselves.

After a short pause while they consider what I mean, most say they are more concerned about the process of dying. I reckon barely 5% express a fear of being dead.

Of those who are fearful of the process, the vast majority are concerned about a range of issues that might arise for them:
•    Physical symptoms they believe they will experience as they die
•    Loss of control and dignity they fear will beset them as they approach the end of their life
•    Sadness at leaving their family
•    The real and potential social and economic consequences arising during their illness and after their death that might affect their family and those they love — the “mess” they leave behind
•    Regrets about the things they won’t have time to do, the things they did not do, or, sometimes, the things they did during their life.

Most have worked out some accommodation with the reality of being dead — be it intractable faith, undoubting atheism or humanism, or anywhere in between. They often volunteer something like: “There is nothing that I can do about it”, or “I have had a good life” and “You just have to accept it”.

They are not distressed by the fact that they will be dead.

Not everyone has the opportunity to air these issues. Some die suddenly with little or no warning and while discussion is irrelevant for them, it may still be an issue for their families. Others may not be offered the opportunity to talk about their dying by their doctors or their family, and die with their unspoken concerns unheard.

Few, however, are like the woman described above.

Palliative care is seldom the first and only mode of management for fatal illnesses in the developed world. Most people have been subjected to a wide range of attempted curative or life-prolonging treatments before they are referred to me.

Death is experienced as the last stage of a long process of medical activity. This woman was unusual in that she did not take up the offer of possible life prolongation.

For most of the rest of us, acquiescence to treatment has become a duty — our family and community expect it of us.

I am not sure that this is progress.
 

Associate Professor Will Cairns is the director of the Townsville Palliative Care Service, Queensland.

6 thoughts on “Will Cairns: Fear of dying

  1. robert marr says:

    Thank you for raising  this important issue of treatment before death. I believe every terminally ill person should have the right to not only refuse treatment but also request and receive medical assistence to end their sufferring. Of course there would need to be safeguards but in states that have legalised voluntary physician assited dying such as, Oregan in the US, there has been no documented abuse and indeeed widespread majority support.

  2. Douglas Gow says:

    I hope, if faced with the situation you describe, that I will have the courage to resist calls to try treatments that I know in my heart will not cure me but will merely prolong the illness and make that period pretty unpleasant.  Once treatment is started it’s hard to persuade family and physicians that you want it to stop.

  3. Graeme Burger says:

    Thanks Will, 

    Just a few comments.

    1. Provided that was not a small cell lung cancer, recent shown she would live longer getting Palliative Care than if she had chemotherapy

    2. Prof Colleen Cartwrights studies show that in surveys palliative patients priorities are firstly “I want to be control” second “I don’t want to be a burden on my family” and only third “I want to be free of pain and other symptoms”

    3. The issue of prolonging futile “Treatments” is such an issue that New York State has enacted legislation that ensures that all patients with “Life limiting disease” be offered the option of Palliative Care as an alternative to continued “active treatment”

     

     

  4. Dr Kevin B.ORR says:

    I am dying, not of cancer, but of pulmonary hypertension. No cure. I will accept treatment that may relieve the dyspnoea and may be even prolong life for a time as long as it also allows me to increase my knowledge and contribute to my family and to society. When that is no longer possible, I hope to euthanase myself.

    The atheists say that science disproves God and life after death. Maybe the popular ideas of those philosophies but the Uniiverse is a big place and has many mysteries ot be uncovered both in the micro-and macro-versions. Anything is possible so do not give up hope.

     

  5. Australian National University says:

    Thankyou.As a GP VMO in Palliative Care I recently cared for a colleague, my age, who was diagnosed with Pancreatic Cancer.She had localised lymphatic invasion and lung metastasis at diagnosis.She opted for no active treatment.She had full control of the following 3 months and 1 day when she died  at home.She did not spend a day in hospital, she had precious time with her family as she too calmly but sadly faced her situation.I felt humbled and priveleged  to be involved in her care and admired her clarity in deciding on palliative treatment.

  6. Kathy Kastner @kathykastner says:

    Dr Cairns, Just reading your post makes me feel calm and serene. While I know cancer (seems to) get the most attention when it comes to life-prolonging decisions, I think there is much work to be done to educate those – like KBO, above – with chronic conditions. As I continue to learn more about trajectories, crisies points along the way and (in my opinion) lack of contextualized education, hope that the future reframes hope in the spirit of Palliative care. To hope for the kind of state of mind you described, right up until the end. Calm and serene. Thank you for sharing your beautiful words and experiences.

     

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