End-of-life care, Part II

Questions for the end of life

No one really wants to talk about dying, but it is a reality all of us will face. End of life care is a critical aspect of care that is often overlooked and is not well enough understood.

I have had the privilege of sitting in on a few end-of-life consultations and seen the pain, but also the beautiful raw honesty, love and clarity that comes out of them.

Dr G. Howes, a doctor extraordinaire and palliative care expert from Sunninghill Medical Centre and Wits Houghton Hospice, says the following to patients during a consultation: “ In the context of serious illness, we can control the physical needs medically. Time is short and you would want to make a peaceful exit and I can understand your sadness. I will create a space for you to physically deal with your sense of loss, an impending loss and the loss of the potential”. He said this to a dying guest while her pregnant daughter held her hand. All of us in that room knew that she would not live long enough to meet her grandchild.

It is said that medical professionals shy away from hard conversations around dying. I suppose it makes sense. These are the people who fix us when we break and put us back together. Their whole purpose is to extend our lives, not to stand by powerlessly when that is no longer an option. As Athul Gawande says in his book Being Mortal, the two big unfixables are aging and dying. It is therefore no surprise that these are the areas in which least doctors specialise.

Health care workers need to have a series of conversations with the dying and get an understanding of the patient’s mental, physical and emotional state.

Firstly, although the medical team and others understand what the prognosis is, often the patient does not. I have heard people say, “I’m in a bit of a pickle”, when in fact, they are hours away from death. A conversation is also desperately needed around the patient’s fears. I have heard, and believe this to be true, that people are not so scared of death, but really of dying,… of the suffering that might take place. Having an honest conversation with the patient about what scares them is crucial for them and also for the loved ones. If you know what to expect, what is going to make that heart stop beating and how it might unfold, it gives you a sense of peace which ignorance cannot bring.

One should also chat about what the goals of the patient are. These goals may range from being able to die holding a beloved pet, to being able to listen to her/his favourite music, seeing certain people, NOT seeing certain people or to changing a will. The goals they want to reach are usually surprisingly simple and reminds me that the little things, are, after all, not so little. It is never about possessions, and always about relationships.

Then there is a balance that the palliative, EOL (end- of- life) doctor needs to discuss with the patient. What trade-offs are they be willing to make? Will they endure slightly more pain, in order to be more aware, or would they rather be pain free and sacrifice the goodbyes?

End of life patients have goals, dreams, aspirations and fears, just like the rest of us, and addressing these questions, remembering that they are more than just patients, but are still people, can bring peace and even joy in the most painful of times.

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