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Why we all need to have end of life conversations


The last time I was in Israel, I went on some home visits with a palliative care physician in the town of Sfat near the Sea of Galilee. My colleague, a devout Jewish doctor, took me to several homes to offer advice on managing his most serious, terminally ill patients. One older Chassidic Rabbi was dealing with an advanced lung cancer, and having a difficult time accepting any kind of help from his young adult children. Next was a young Sephardic woman with advanced ovarian cancer, living in a small apartment with her mother and feeling abandoned by her other siblings. Then there was an elderly widow with far advanced breast cancer, struggling to get through her days because of poorly controlled pain.

In each encounter, the room would eventually fall silent, anticipating my response. To the ailing rabbi I said, “Children usually want to be with their parents when they are ill; it’s a way of expressing that they care;” to the Sephardic young woman, I asked, “Do you think your brothers and sisters are keeping their distance because they are indifferent or because they find it painful to see you so sick,” and to the elderly woman I said, “You’ll be feeling much better once your pain is under better control.”

In each instance, nothing I said struck me as particularly profound, until, that is, I witnessed their responses. The rabbi shed a tear, thanked me and shook my hand. The Sephardic woman smiled as she let go some of her anger towards her brothers and sisters; and the elderly woman quickly retrieved a plastic bag, which she proceeded to fill with the various dried fruits and homemade pastries that bedecked her table and handed them over to me.

Teaching palliative care around the world, I am always struck by how similar people are, wherever they happen to live. In our humanity, we share very common concerns and struggles regarding how to cope with vulnerability and the inevitability of death.

Whenever my plane takes off, I always think about how air travel is the perfect metaphor for life and death. The moment we are born, our lives take flight. Some people remain airborne longer than others; some run into more turbulence than others. Yet, most people are so engaged in the journey, they ignore the fact that landings are inevitable. Working in palliative care, I can assure you, there is a world of difference between a good and gentle landing, as opposed to just ‘crash and burn.’

In our aversion to death, we are like the airline passenger who only wants to think about the free food and complementary drinks; check out what movies are available, and periodically, look out the window and enjoy the view. Focusing on the flight lets us shut out the reality that the ground we see off in the far distance, is ground each and every one of us, without exception, must inevitably return to.

Not acknowledging death does not make it go away, anymore so than talking about it will somehow hasten its arrival.

Discussing death allows you to make plans and to make your wishes known to loved ones. It allows you to state your preferences, affirm your values and clarify your choices. Study after study indicates that it increases the likelihood that you will get the care you want, when you want it and where you want it; and that it could spare your family the anguish of having to make a decision on your behalf, should you no longer be able to communicate, without knowing what you might have wanted under the circumstances.

These conversations do not have to wait until someone is dying. They simply acknowledge that death is woven into our DNA; that it is inescapable.

If all this sounds too daunting, here is some language you might want to consider. Imagine turning to the person you have in mind and begin by saying something like, “I love you.” If that feels like a stretch, you can always start with: “Look, I care about you, most of the time” or “What matters to you matters to me.” “When one of us gets sick or is facing the end, is there anything we should know about each others wishes, to make sure we each get what we want?” You can also speak with your doctor and ask him or her about an advance directive and naming a healthcare proxy  that is, someone who will speak on your behalf when you are no longer able to do so for yourself.

Does that really sound so difficult? Do you really think that you are likely to hurt someone you love or care about by saying “I want to be able to make good choices for you, so tell me whatever you think I need to know to get it right.”

After all, who doesn’t want a gentle landing, as life itself comes to a complete and final stop.

Harvey Chochinov is a Distinguished Professor of Psychiatry at the University of Manitoba, Canada Research Chair in Palliative Care and Director of the Manitoba Palliative Care Research.

This blog is republished on Healthy Debate with the kind permission of our friends at EvidenceNetwork.ca

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4 comments

  1. Kathy Kastner @kathykastner

    Dr Chochinov’s Dignity Therapy approach is so important – and is a game changer in end of life conversations, with an approach that honours the person’s life. (this is not to be in any way confused with assisted death).
    http://www.bestendings.com/index.php/blog/dignity-therapy-at-life-s-end-thank-you-dr-harvey-chochinov.
    He was one of the inspirations for my TEDtalk “Exit Laughing” on issues – for patients and families – in understanding the ramifications/consequences of NOT taking the time to understand options, and sharing end of life wishes with everyone who matters.
    http://www.bestendings.com/index.php/blog/tedxyorku-speaking-about-bestendings

  2. Elizabeth Doyle

    I agree that conversations about a person’s wishes are of the utmost importance, precisely because they make it possible for a person’s values to be upheld and their dignity preserved/honoured at the end of life. A point worth emphasizing is that these conversations are being encouraged not because people haven’t considered them important historically – after all, these conversations were had and documented by pre-Socratics. We’re seeing an increase in dialogue surrounding this ‘kind’ of dialogue because these conversations are really damn hard to have, present-day. Why? Because our nearest and dearest (or however far our individual circle of care extends) need to be shown not only that we care about them, we need to get their defenses down by opening them up to the inevitability (as distinct from imminence) of their personal death and attendant vulnerability. There’s the hard part, because, as you note, most people are ‘along for the ride,’ focusing on distractions rather than the destination. One inroad that comes to mind is to encourage people to become more ‘at home’ with death, without being viewed as morbid or obsessing.

    Elizabeth Doyle, Ph.D. (ABD) Medical Ethics
    (I’ve written extensively on this topic, for more see: http://www.elizabethdoyle.weebly.com)

  3. Zal Press @patientcommando

    Death isn’t so bad – its dying that gives us the creeps. Many of us think of it as a messy business – old folks lingering in nursing homes, semi catatonic drooling uncontrollably with the smell of urine hanging heavy in the air.

    How many of us have watched our parents die either unable to make decisions or having made awful choices and we swear we won’t make the same mistake. Then once the parent passes away, that commitment vanishes as well.

    I was no different. I didn’t have any conversations until Kathy Kastner pointed out to me a few years ago that as a 60 year old male with a life long chronic illness I’m a likely candidate for a long, lingering dying experience, and perhaps at an earlier age than many.

    What I then discovered was that the conversation isn’t as simple as tattooing DNR on my chest. We need to understand our personal values. understand who is important to us and pick a substitute decision maker who won’t waver from our wishes in a crisis.

    While death is simple – have a will so your property can be divvied up without family going to war – Dying is a process that requires engagement from many stakeholders. OHIP needs to pay physicians for the “conversation” with patients. Lawyers need to be as interested in Living Wills as they are in Last Will and Testaments. Palliative Care needs to be re-branded and introduced much earlier in the process and embraced not feared.

    Dying is the journey of end of life. Death is merely the destination. Once we understand that dying is a natural part of a healthy life, beginning the “conversation” that improves the quality of that part of the journey becomes much easier.

    There’s more of my Kathy Kastner inspired “conversation” on my Patient Commando blog http://patientcommando.com/patient-commando-blog/2014/03/whos-important-in-my-end-of-life-plan/

    • Linda Murphy

      Great reply. I especially agree with: ‘ OHIP needs to pay physicians for the “conversation” with patients. Lawyers need to be as interested in Living Wills as they are in Last Will and Testaments’. My parents and I were very,very lucky to have a geriatric psychiatrist agree to lead this discussion for us – a poignant and powerful conversation that I will never forget. It made their wishes crystal clear, reassured me that they did not fear death as much as being separated and re-enforced that their quality of life was directly related to being together. And it was very therapeutic for all of us. Thank you for this article and the threads that evolved from it.

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