Facing up to death is difficult being able to communicate openly and honestly with family and friends is often of immeasurable comfort.
What is palliative care?
Palliative carers aim to help with quality care at the end of life. They can organise better pain relief and other services to make patients more comfortable. Palliative carers also help with planning the practicalities, as well as offering support to carers and grief counselling.
Most of South Africa’s hospices come under the umbrella of the Hospice Palliative Care Association of South Africa. HPCA’s mission, by supporting member hospices, is to promote quality of life, dignity in death and support in bereavement for all people living with a life-threatening illness.
“We work very hard to emphasise the fact that hospice and palliative care is a philosophy of care, not [just] a building, and can be practised in any setting, wherever the patient is,” says Dr Meiring.
“Hospices across South Africa provide care mostly in the comfort of the patient’s own home, with a few organisations having in-patient facilities where patients can be admitted. For those unable to pay for services, hospice care is provided free of charge.”
What happens when you die?
No-one knows what it’s like to die, but an international collaboration of scientists and doctors is studying what happens to a person after they are determined “clinically dead”.
Researchers say that death is not a specific moment: it’s a process that begins when the heart stops beating, the lungs stop working and the brain stops functioning. They have discovered that thoughts may continue for up to an hour after clinical death.
Studies have shown 10-20% of people who recover after a cardiac arrest and clinical death report lucid thoughts, reasoning and memories of the time during which they were clinically dead.
Planning for the end
Start planning as early as possible for how you want to live the last months of your life. Consider medical, practical and financial arrangements.
Put plans in place that will let your wishes happen, such as dying at home or having your cultural or spiritual wishes honoured.
Gather as much information as possible concerning decisions around healthcare. It’s OK to refuse treatment.
Communicate and ask questions about the pain and other symptoms you may be experiencing. All too often people suffer when more can be done.
Talk to the people who are important to you. Share with them your views and how they can help you.
Talking to children
A generation ago, children were largely excluded from the process of dying. To protect them, no-one mentioned the word “death”, they weren’t invited to funerals, and the whole procedure was cloaked in euphemism and secrecy. Now, however, experts believe that children who are exposed to the process cope better. Here are some tips:
Involve children in the process. For example, let them choose a song for the funeral, or let them say goodbye.
Talk openly and simply about dying to allay children’s fear and confusion.
Answer questions fully. “Tell them as much as they need to know but don’t go into the deep details,” recommends Annie Laurie, a community outreach worker with Make Today Count.
Explain what the person died of. Just saying they got sick may make a child fear death every time they get sick, too.
Talk about heaven if your family has faith. Alternatively tell them the person will always live in your hearts and minds.
Write a letter, make a DVD or frame a photo of the dying person with the child – anything to help the child know how special he or she was to the person.
Introduce a family ritual after the death, such as lighting a special candle for Mummy every week – an opportunity for families to come together and value what’s important to them.
Don’t try to overprotect children. Death is a part of life and it’s important for them to work out their own coping mechanisms.
The Euthanasia Debate
Euthanansia is illegal here. However, patients have the right to refuse medical treatment even when this may bring premature death. There was a move to extend this in 1997, when the South African Law Commission released a discussion paper on euthanasia that included a Draft Bill on the Rights of the Terminally Ill. This explored issues such as physicians administering pain control medication even though it could hasten death, and assisting a suicide under certain strictly defined conditions.
The following year the South African Medical Association (SAMA) asked that the proposed legislation be put on hold amid protests by groups including Doctors for Life, Christians for Life and the National Alliance for Life (NAL).
In a 2005 poll by Research Surveys, half of the South Africans questioned said people should never be allowed to take their own life, even if they were terminally ill and in substantial pain.
Currently some forms of voluntary or physician-assisted euthanasia are legal in Belgium, Luxembourg, Switzerland, the Netherlands, and in two US states. Interestingly, when legislation was passed in most of these countries, palliative care services were not well developed, says Dr Meiring. Commonly cited reasons for wanting to end one’s own or a loved one’s life include intolerable suffering and a desire not to be a burden to others. Proper palliative care can eliminate both, she says.
(This is an edited version of an article that originally appears in the Reader's Digest magazine.)