Talking about death
A difficult but necessary culture shift
When faced with death, we are confronted with our own emotions and the intense pain that comes with losing someone we love. Often, the pain can be amplified by having to make end-of-life decisions without knowing if that is what the person wanted.
In an article for the New York Times, Dr Kathryn Dreger describes what Covid-19 does to the lungs and what it means to be plugged to a ventilator, and what other risks are associated with being treated for the disease. In doing so, she underlines the dramatic damage the virus can do to someone’s health and reminds us about a few important questions. She says: “What do I value about my life? If I will die if I am not put in a medical coma and placed on a ventilator, do I want that life support? If I do choose to be placed on a ventilator, how far do I want to go? Do I want to continue on the machine if my kidneys shut down? Do I want tubes feeding me so I can stay on the ventilator for weeks?”
These are valid questions that may arise should your or a loved one’s health trajectory decline. You might not be able to speak for yourself at this critical point. Should your condition deteriorate further, the hospital will contact your family and over the phone advise them of the prognosis. Did you ever talk with them about your end-of-life preferences?
Such conversations might be difficult and avoiding talking about dying is not something specific to South Africa. The Conversation Project, which started in the US in 2010, conducted a survey in 2018 that found that “while 92% of Americans say it’s important to discuss their wishes for end-of-life care, only 32% have had such a conversation”. And only 23% put their wishes in writing. Important conversations that should have happened before dying are not happening. And yet, not one of us is immortal.
A study conducted by Kiran Dhillon, Dave Jerome, Rajiv Teeluck and Yan Yu, about Advance Care Planning in Canada, showed that “up to 76% of patients will be unable to participate in some or all of the decisions affecting their own health care at the end of life”, with only 26% of the physicians surveyed saying that they were comfortable to lead such conversations.
However, it does not have to be this way and a culture shift is possible. An episode of NPR’s Planet Money from 2016, explained that in the town of La Crosse Wisconsin in the US, “96% of people who die in this small, Midwestern city have specific directions laid out for when they pass. That number is astounding. Nationwide, it’s more like 50%.”
La Crosse’s pioneering shift took off in 1985 when Dr Bernard Hammes, a clinical ethicist at the Gundersen Health System, started an initiative where people were asked to fill a form as they arrived at casualty, or were scheduled for pre-op, dialysis or chemotherapy. The questions were simple, with words like: “If a life threatening medical crisis occurs, do you want or not want treatment X, circle Yes or No.”
The initiative grew into a programme that was then developed nationally and internationally and called Respecting Choices® which includes a stepped approach to Advance Care Planning.
Covid-19 is reminding us of our mortality probably like never before in our lifetime and while we are now spending time at home, it’s important to consider what indeed our medical preferences really are for when such decisions may be needed, and record our wishes in a form called “Advance Directives” (AD). It is also important to nominate two representatives, also referred to as a Healthcare Proxy or Power of Medical Attorney – two people, so if the first person to be contacted is not available, the second will be the back-up.
Advance Directives are distinct from a living will as the former only deals with making decisions about health treatments. Should you extend the document to include longer-term quality of life considerations, then it would be considered as the living will, which includes the AD as part of it.
Our focus on the medical interventions as a first port of call is because in a health crisis, decisions need to be made fast. Loved ones are flustered when you are in a health crisis. It is not a great time to begin discussions. An AD protects them and anchors family discussions, with less place for distress and second-guessing.
Once you have clarity in your own mind and have completed your AD, follow up by having conversations with your family or people close to you, and make sure that you and your surrogate decision-makers have a shared understanding of your wishes. It’s a big ask and they need to be comfortable in accepting the responsibility. You may decide that this kind of decision-making is too hard for those closest to you, and your prerogative is to choose someone who knows you, but who has enough distance and self-confidence to represent you.
Advance Directives require us to make decisions that include the following procedures: cardiopulmonary resuscitation commonly referred to as CPR; the use of antibiotics; intravenous hydration, which is medical intervention that delivers liquid substances directly into a vein; kidney dialysis should your own kidneys stop working properly; provision of food – some people indicate that if they can no longer feed themselves, they do not wish even to be spoon-fed; and breathing – which could include oxygen supplied through a nasal tube, or a fitted mask, or if your lungs are in serious difficulty, a ventilator. Dreger pointed out in her article that should you be infected with Covid-19, the possibility of severe respiratory difficulty is high.
In South Africa, an Advance Directive does not have legal standing. Doctors can choose to be guided by your wishes rather than being legally obliged to adhere to them, but they are still worth doing.
It can be emotionally draining to complete one’s AD, but create quiet time to connect with yourself, your values and what matters most to you. And if you feel uncertain, then remember, these decisions are not cast in stone and you can change your mind. Your thinking is likely to change at different times in your life; it may be influenced by health challenges or your current state-of-mind. You can revisit and update your AD at significant moments in your life.
There are free resources available to guide you in the process: here, where you just need to send a request for an AD template – you can also download the ‘Purple File: Check List for Checking Out’ for free by registering on the website; here, you can access several guiding documents offering support on what to cover in conversations with family, healthcare proxy and your doctor.
People close to you may not agree with your choices and vice versa, and in that situation, it is important to accept and make peace with our differences. True love is about respecting choices, especially when choices differ. DM/ ML
Helena Dolny is a leadership coach and author of Before Forever After: when conversations about living meet questions about dying. Ngiphiwe Mhlangu is a leading journalist and media strategist. Together they joined forces as founders of LoveLegacyDignity, a social enterprise which promotes life-affirming conversations in the face of our inevitable mortality.
Visit lovelegacydignity for more details and to register.
