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Five things to know about end-of-life care
Even in death, Nelson Mandela continues to impart wisdom to us. Many who admired the man as an anti-apartheid freedom fighter and reconciliatory visionary also followed his health challenges in his last days, and the family disputes that surrounded him in his final moments, as unresolved end-of-life issues surfaced and spilled over into the public sphere.
According to international media reports, at one point doctors believed Mandela to be in a “permanent vegetative state” and therefore recommended his life support machines should be turned off. Later, however, he was reported to be “critical but stable.” All the while, there were reports of conflict within Mandela’s family concerning treatment options, estate disposal and burial site selection for South Africa’s first black president.
The fact is that as patients face their own mortality, it can be difficult for them and their families to make even seemingly simple decisions. Research has shown that physicians tend to overestimate prognostic timelines. Patients are sometimes offered expensive, invasive and time consuming treatments, at times to little avail. Undergoing major interventions like surgery or chemotherapy can provide benefit to an individual but there are also instances where such procedures may reduce length or quality of life.
Palliative care medicine has evolved to address this difficulty. If someone is diagnosed with a serious or life-threatening illness, palliative care can be involved at any point in the course of the disease. The goal is to maximise quality of life for whatever time is left.
Palliative care provides comprehensive medical, social, psychological and spiritual support for people with terminal or serious illness. The unit of care is not just the affected individual but involves the support network of the family as well.
Many details of Mandela’s condition were not made public, which is acceptable, as his doctor-patient confidentiality was being maintained. Still, there is much we can learn from his situation and apply to our own lives, especially if we have a loved one who is seriously or terminally unwell.
Here are five things we should all know about palliative care:
• Know your loved one’s preferences. It can be hard to make decisions for someone when they are too ill to communicate. Talk to your ill loved one to decide what is most important to them. Talking about death can be tough but not knowing what that person wishes can add stress and conflict to the family dynamic. Most people, when asked, prefer to be at home surrounded by loved ones when faced with end of life rather than being in a hospital on machines unable to communicate with their families.
• Ask your physician lots of questions. Most good physicians are happy to receive, research and answer questions. Ask about treatment options. And don’t be afraid to ask what would happen if you decided not to receive a particular treatment. Be balanced: try to ask about both the risks and the benefits of anything a medical team can offer.
• Build a good support group. It can be family, friends and support from your religious organisation. When faced with an outcome of a shortened life, one must remember that it is a challenge that one should not face alone. It is also a good time to delegate extra responsibilities and dispose of excess emotional baggage.
• Talk about death. Remember, talking about death will not make it happen sooner. Many families are afraid to talk about end of life with a relative because they are afraid their loved one will “give up” and die sooner. Some families try to block information from the dying patient. The physician’s first duty is to the patient so if the patient wants to know, the physician is ethically obligated to answer honestly. This is a good thing. Planning for death is useful because it can help ensure that one’s end of life wishes are followed and interventions that are not desired are avoided.
• Embrace uncertainty. None of us knows when we will die. Most palliative practitioners talk about prognosis in ranges of time. Although there are certain clinical clues that give a physician an idea about how much time someone has left to live, these are estimates and the physician can be proven wrong. Predictions of time left are generally more accurate the closer the person is to death.
No one likes to talk about death. But talking about it with your loved ones can give insight that can reduce stress and conflict. We have control about nearly every aspect of our lives. Shouldn’t we plan for our final moments as well?
• Ravindra P Maharaj (MBBS, MSc, MRCP, American Board certified in internal medicine, geriatrics, hospice and palliative medicine) is a lecturer in the Department of Clinical Medical Sciences, University of The West Indies, St Augustine campus.
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