Dealing with patients who are in the later stages of a terminal illness is never easy. Emotionally draining, it is difficult for everyone involved: the dying person, the family and loved ones and the healthcare providers.
But there is a field of healthcare that has been developed over the years to ease the pain and to help manage the symptoms to make life as comfortable and as dignified as possible for the dying patient and to alleviate the stress for their loved ones. It’s called palliative care.
The word “palliative” means “relieving without curing”. Another definition is “moderating pain (or sorrow) by making it easier to bear”. A more comprehensive explanation comes from the World Health Organisation (WHO): “An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessments and treatment of pain and other problems, physical, psychosocial and spiritual.”
What makes palliative care unique in medicine is that it has a holistic approach that is concerned not just with the patient’s immediate symptoms but also with his or her overall condition in terms of body, mind and spirit, with the aim of accomplishing the highest quality of life possible.
Although extremely difficult for some people, one of the most important steps to take is to engage in frank and meaningful end-of-life discussions between the patient, his or her loved ones and the medical personnel concerned. Many studies have shown that such discussions of this nature can help avoid extensive medical interventions that may well be intrusive and futile — the results of which can be excruciating for patients in their last weeks or days.
Of course, it all comes down to the decisions made by the patients and their loved ones, assisted by pragmatic advice from their caregivers. There are many other important decisions that need to be taken with regard to the welfare of the patient. First and foremost, where the patient can or needs to be treated: at a hospice, a hospital or at home?
Because medical needs vary depending on the terminal illness, there are existing specialised palliative care programmes for common conditions such as cancer and Aids. Specialised care is needed if the condition leads to changes in brain function that can lead to coma or dementia. Consideration must also be given to issues such as nutrition and hydration and how they should be administered.
Spiritual issues are crucially important to most people as they reach their final days and much succour and comfort can be provided by spiritual counsellors, priests, rabbis or imams, making them integral to the caregiving team.
Practical issues need to be addressed: are there orphans left behind? Is there a will in place? Who is the executor? Are there insurance policies that need to be sorted out? Bank accounts to be closed? Are there organs to be donated?
There are many important issues concerning loved ones left behind as grief and bereavement counselling may be needed. To the people left behind, death is one of the great levellers in life. And one of the most humbling aspects of the process is the quality of the palliative care given by professionals who deal with terminally ill patients in hospitals, hospices and at homes.
These are truly dedicated people, who are blessed with great sensitivity, tact, maturity and understanding. And, above all, levels of compassion and kindness that make a profound difference to the lives of those near the end.
Death and Dying will be the topic of Bonitas HouseCall on SABC2 at 9 am on March 18