When teaching the medical students, I always ask, “is it your job as the doctor, to make someone feel better?” Invariably they say that it is.
But really? Is it?
I believe my job is to help my patients face whatever they have to face while feeling safe and cared for. This often means discussing hard truths in the context of understanding their values and preferences about all things life and death. The desire to make patients feel better leads to sugar coating, half-truths and at worst to avoid the subject altogether ‘just in case they become upset’.
There are days that I am overwhelmed and almost paralysed by other South African doctors’ approach to their patients and families with respect to serious decision making. This is particularly distressing in the private sector. I cannot count the number of patient stories I have heard with the same theme; in the face of incurable illness, the patient has been admitted to the intensive care unit and subjected to multiple treatments, tubes and procedures, unsurprisingly with no happy ending.
So, what is it that makes it so very difficult for doctors to recognise that the end is near and then provide appropriate care and support through that time?
Firstly, I wonder if it is that they fear death to be the worst possible outcome for a patient. Perhaps they fear their own mortality? I believe it is far worse to be deprived the opportunity to say goodbye, to seek forgiveness and to be forgiven, to spend time where you want to be, surrounded by those that you love. Dying in the ICU also comes with multiple unpleasant and painful experiences, increasing rather than relieving suffering.
It could simply be ignorance of ethics and the law that underpin the principles of palliative medicine. Many doctors seem to erroneously believe that palliative care and euthanasia are the same thing. Recently a desperate woman called me; a physician had told her in a very aggressive tone, that if they did not take her extremely frail and elderly father, with advanced dementia (who was now refusing to eat), to theatre to place a feeding tube in his stomach, that he would starve to death which is a terrible way to die. Not only is this a cruel and unprofessional thing to say, it is just not the truth.
Of course, it could be a fear of their own failure and powerlessness; the ego driven doctor unable or unwilling to admit their own fallibility. And even if they were able to go there in their own mind, few possess the communication skills required to make truly shared decisions with patient and/or family.
So, what is the answer?
Perhaps a good death, like raising a child, takes a village. Many of us in the field are working very hard to teach the crucial skills of communication and palliative care already. We need doctors to reflect on their practice and seek to acquire those skills. Hospital managers and medical schemes need to audit admissions and deaths to review the clinical appropriateness of each case. This will help to identify the outliers – those doctors who consistently over treat. Hospital managers also need to act on patient and family complaints. Often they themselves feel powerless as they only manage the facility and not the doctors that they house. And besides, the doctors are the ones that bring in the money.
And lastly, the public. As surely as you were born, you will die. Inform and educate yourself about palliative care. Ask for it and demand it. Speaking to a health provider that possesses these skills does not result in death itself, but rather opens a new conversation of hope; hope for a good life, with reasonable goals and ensuring that you have some control when your turn comes.
For more information on palliative care in South Africa, visit www.palprac.org or www.patchsa.org
This opinion piece was written by Dr Julia Ambler
Dr Ambler is the Co-Founder and Medical Director of Umduduzi Hospice Care for Children and Chairperson of The Association of Palliative Care Practitioners of South Africa (PALPRAC)
The piece was originally published on the Umduduzi website on 21 July 2024, and has been republished with permission
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