I’m sitting with Marie. She has big brown eyes like Bambi. She’s wearing pink pajamas with matching pink slippers and watching the latest Netflix sensation – some office romance starring Jennifer Lopez. I’m just hiding here with her, writing my blog. The open-door-policy in my office leads to too many distractions, so I often escape here when I need some peace and quiet, and Marie likes it when she has a bit of company.
Marie has a complicated progressive neurological condition from which she will not recover. There are many ways in which we can prolong her life. It is common with Marie’s condition for patients to receive daily OT and physio, have a PEG inserted for feeding and eventually go onto a ventilator. She can technically live for another ten or twenty years.
But you know what? We are going to do none of that. We are just going to let the disease progress. We’re going to make sure Marie is loved and looked after and will never be in pain. This is what she wants. Her children, who are overseas, are also all aware of her decision because it was all put in a living will, and Marie had the hard conversations with her children when she could still speak.
It makes it so easy for us to manage Marie’s care knowing that we are all on the same page. Marie feels safe because she knows we are exactly aware of her wishes. We all know that under no circumstances must she ever be admitted to hospital or receive any heroic interventions. Marie will slip away with us, with carers that she knows well, and who adore her. She will have a beautiful view of our gardens and her favourite composer, Hans Zimmer will be playing on the tv. Her palliative care doctor will manage pain and anxiety, and we know that she would like Nthabiseng to stay with her at night when the time draws near.
The saying that the best laid plans of mice and men often go awry, is especially true when someone becomes terminally ill. We see all the time how bedlam, egos and greed tear families apart. What should be a gentle transition and gentle ending for a patient becomes a time filled with chaos and arguments. Having a living will or an advance health directive in place is so critical to prevent this. It is also vital for you to choose the right proxy so that when the time comes for someone to advocate for you, your “person” is up for the task.
There is a patient somewhere in Johannesburg known by the name of Abaddon. In meetings with palliative teams and medical insurance people, I pick up from time to time when nurses and carers speak about Abaddon. I’m not sure what his real name is, and I’ve never met him, but the fact that Abaddon means “the destroyer,” is a clue that he is not an easy patient.
His story is that he was a very successful and ambitious man. His children were top achievers in a fancy Afrikaans private high school. His wife was a beautiful trophy who managed the children and household while Abaddon soared up the corporate ladder. Abaddon however contracted motor neuron disease which ravished his body at an alarming rate. Whilst the disease was in its early stages, Abaddon appointed his wife as his health proxy and set out a living will. One night, he was short of breath. She panicked. She did not contact his palliative team, but rather called the ambulance. He was rushed to hospital, intubated and put on a ventilator. When he woke up in ICU he was furious. His wishes of receiving no radical interventions were ignored. His wife, who most definitely requested and allowed for acute intervention because she loved him, made an unforgivable mistake.
His anger towards his family and everyone he interacts with is now legendary in the medical community. He is bitter and angry. He has not made eye contact with his wife since the moment he woke up in that ICU bed. His one son started wetting the bed again even though he is in high school. Abaddon’s rancor is so potent that it seethes out of his limited body, infecting his entire household. I feel desperate for them all. There are no winners in situations like this.
When you choose your health proxy, you need to have conversations with them often. Choosing the right person isn’t enough. You have to prepare them. Make sure they know what is important to you. Tell them what you are scared of, remind them of who the people are you love most. Remember that they also need to come to terms with what is happening to you and be prepared to do what you have asked of them when the time comes.
Tell them what scares you most about being at the end of your life; the fact that you might be in pain, the fear of being a burden on your family, not being able to think. Many people tell me that they are scared of losing the ability to perform daily living tasks, like going to the bathroom on their own, or having a bath.
Having a health proxy is not just important at the very end. Even during other illnesses, it is important to have this trusted source who can remind you of your wishes and stand by you when difficult decisions need to be made. I am surprised how often children or parents demand that patients have chemotherapy against their wills, or participate in painful interventions which may prolong life, but steal its quality.
You can discuss with your loved ones when you would like to be treated with antibiotics and when you don’t want to. You can discuss during which stage of your life you would be okay with being put on a ventilator. As we know, one can be weaned off them and return to a full life, but you could end up stuck on it for years and making the decision for a withdrawal is complicated and traumatic for most people. Have the discussions around PEG feeding when there is a temporary or permanent reason you can no longer swallow. Discuss when it will be okay to do CPR on you and for which grounds you would consider surgeries. Make sure your proxy understands your spiritual or religious values. You also need to discuss with your proxy if you want to donate your organs and when deciding this, realise that you will be placed on life support while waiting for the harvest.
We see the resentment and arguments when families and loved ones are angry about choices that are made. We also see the gentleness when this is prevented. Marie and Abaddon’s stories could not be more different. At the heart of all of this wasn’t the paperwork. It was, and always is, communication. A living will and a health proxy are simply tools that allow the people you love to act in line with your wishes, even on the worst day of their lives. It is a guardrail that protects you, and them, at a time when it is almost impossible to know what the “right” thing to do is most of the time. It is getting the right person to make the right decision even though they are panicking and scared.
When you have sat down, often, and had the hard conversations about pain and dignity and chemo and ventilators, you give your loved ones a gift. They will know they are honouring you without second guessing, fighting or guilt.
So if you have not done this, pour a cup of tea, sit down with someone you trust, and start talking about what matters to you. It won’t be easy, but it might be the kindest thing you ever do for your family. When emotions are high and impossible decisions have to be made, the people you love won’t have to guess. They’ll simply be able to respecting your wishes.