In the midst of the current health crisis, and a time of medical resource rationing, it’s time for honest communication about dying.
The COVID-19 crisis cuts deeply, not just because of the spectre of widespread illness and death, but also because the global response goes to the heart of what it means to be a human being.
How do we sustain human connection when we are in self-isolation? Is preventing contagion more important than holding the hand of a loved one as they leave this world? How do we mark rites of passage if we cannot gather, in person, for funerals and wakes? These are the kinds of questions those of us in the palliative care sector are grappling with every day.
The role of palliative care is to provide specialised medical support for people with serious illness, focused on providing relief from symptoms and stress. The goal is to improve quality of life for both the patient and the family by putting the patient at the centre of the care being delivered. This means it is essential to listen to what the patient and their family really want, and to attend to all of their needs as human beings: physical, emotional, spiritual.
“International research shows that up to two-thirds of people haven’t drafted an advance care plan that outlines which medical treatments they would accept or refuse, where they would choose to die and which decision maker they would designate to act on their behalf
COVID-19 is forcing people all over the world to look death in the eye and ask questions about the trade-offs they are willing to make. One of the positives that should come out of this is the beginning of a new, more open, conversation about the best way to die.
Part of this conversation must be the practical considerations that one must plan for in the event that they become terminally ill. Most people put this task off because of the sadness and cruelty they associate with death. But helping your family to understand your healthcare preferences is an act of profound kindness.
International research shows that up to two-thirds of people haven’t drafted an advance care plan that outlines, for instance, which medical treatments they would accept or refuse, where they would choose to die and which decision maker they would designate to act on their behalf if they become incapacitated. This statistic is likely to be much higher in South Africa.
A new study in JAMA Internal Medicine questioned 180 patients over age 60 with serious illnesses; most said they would trade a year of life if that meant they could avoid dying in an ICU on life support. The same study suggests that patients with serious illnesses are often asked whether they would prioritise relief of pain and suffering over longevity if these two goals were to come into conflict. Most stated that they would prioritise relief of pain and suffering.
However, it is difficult for doctors and family caregivers to action such preferences without knowing the limits of these preferences or how much time alive patients would be willing to sacrifice in the service of their palliative goals.
“Family members can feel lingering trauma if they’re forced to make life-or-death decisions for loved ones who never discussed what they wanted
The onset of the COVID-19 pandemic introduces the pressing question of whether a hospitalised patient who’s seriously ill will accept the invasive and aggressive treatment of intubation and ventilation. This traditionally can include placing a hard, plastic tube down your windpipe, inserting needles into your blood vessels, and using machines to maintain your regular bodily functions (a ventilator to help you breathe, a dialysis machine that filters your blood when your kidneys are damaged). The survival rate of those who go onto a ventilator is low.
In the absence of an advance care plan, the default will be the standard hospital procedure. Family members can feel lingering trauma if they’re forced to make life-or-death decisions for loved ones who never discussed what they wanted. Many older patients with COVID-19 may opt not to undergo ventilation and in ICU. No one should impose that on a patient, though if there’s true scarcity, that may arise. But patients might choose it for themselves.
There will be an increased need for home-based palliative care for those patients who either choose not to be referred to hospital or who do not have access to hospital. What measures are in place to support care in the home setting? We need to be ready for a scenario where ventilators and ICU beds are in short supply requiring doctors to triage cases, as has already happened in several European countries. This will necessitate that the state, healthcare professionals and medical schemes have viable alternatives in place. It would be unconscionable to have patients dying at home without adequate support.
If older people have paperwork stashed in a drawer or safe, now is the time to find it and see if their instructions still reflect their values. If so, they should scan the document and send it to family members and doctors. Completing documents without the associated meaningful conversations with loved ones falls short of the goal. And for those who never got around to drawing up advance directives, appointing a decision maker — and telling that person what’s acceptable and what’s not — is crucial.
With day-to-day life feeling so uncertain, talking honestly about death, and taking control of how you die can be empowering, and lessen the feelings of anxiety and fear about the unknown.
This article first appeared on News24.com
