It is quite natural to be afraid about palliative care.
It conjures up images of a death sentence and the use of morphine to make patients stuporosed until they die.
Palliative care deals with death and is therefore always stuck with this myth and misunderstanding about what it is.
Palliative care is not just about dying.
It’s very much about life, trying to live as well as one can, before the illness takes its course leading to death. It is not uncommon for patients with cancer or other life limiting illness to experience pain, nausea, constipation or lethargy which are unfortunately a devastating part of an illness. Patients and families tell us they need information, reliable access to help, and relief from distress so they can live as well as possible with their medical condition.
Palliative care is the solution.
Then there is also the psychological (personal) and social (friends and family) consequences of being ill and how illness can impede one’s life. Palliative care deals with these issues, then improves pain and helps to control nausea and constipation.
It provides means to overcome tiredness by trying to do things a different way or access to a scope of complementary therapies. It provides personal support to deal with the illness but it also helps friends and families during the illness and also, importantly, after a passing.
All of this serves to improve the life of the patient beset by the problems of illness, to live, as well as one can with their illness before a patient’s passing.
Each patient’s experience with their illness is very different, very unique. It could be pain as the main problem but could be a whole myriad of other issues. Pinpointing the main issue is important in palliative care and that’s why we have a team of health care professionals each with their own expertise.
Your doctors will make the right judgement in terms of medicines. The nurses will provide the nursing care and monitoring required. Referral to outside services will be made if needed eg….. A dietician will provide advice on what is most appropriate when patients are already so poor in appetite and are losing weight. A psychologist is important in terms of helping patients deal with their own illness, its outcome and the understanding, and the meanings behind the illness, but also helping family’s and friends cope with the grief of a loved one with an illness.
Each patient is different and each patient requires the individual attention of palliative care.
Only when these many issues are dealt with, not so much solved, but perhaps made more meaningful or acceptable, can patients then think about moving on, overcoming their pain and then trying to deal with the issues that are most important to them.
Doing something that they have always wanted to do, saying something to their family members that they have always wanted to, leaving behind a legacy that the family will never forget. These are the things that mean so much to friends and family when they are left behind.
Palliative care provides that opportunity.
Sometimes pain or nausea or tiredness cannot be 100 per cent overcome. The explanation for why these problems cannot be dealt with completely is important as it helps us as a patient to accept and manage these problems. And then to move on to the next issue.
If a patient’s pain cannot be completely controlled, we work with that patient to try and help that patient manage as well as they can and still go on to deal with the next issue.
Despite all this, many patients still see palliative care initially as a death sentence and therefore something to be avoided altogether. Many patients avoid palliative care but then suffer too much from their pain or nausea.
Many a patient has said that if the pain were managed earlier then they could have got on with their lives much, much earlier and be in a better frame of mind to deal with issues they need to deal with.
Morphine is only one medication that is used to control pain and palliative care specialists are well trained to ensure that the doses are not too high to impair thinking.
However it is not uncommon when a patient’s deterioration is confused with medications, preferring to blame medications for disease progression or deterioration rather than recognising that the underlying disease has unfortunately got worse.
All patients unfortunately will die and medicine cannot reverse that. It may delay the inevitable. However many in our community believe and seek and demand that treatment continue just in case cure is around the corner, which rarely is.
This demand leaves many to deny what will happen eventually. Sometimes to the detriment as a last minute wish of a patient or family may not be given its due justice or importance until it is too late.
Planning to complete our life’s tasks needs to be thought of when a diagnosis is given.
Palliative care is initially frightening to everyone; But once we understand what palliative care can do to help patients through their treatments, to control symptoms during treatment, to provide support for patients and family’s to deal with the psychological and social impacts of illness; we should welcome and not deny ourselves.
