Palliative care is a very misunderstood concept; mostly because people avoid thoughts of being seriously ill and needing the additional care that hospice and palliative care can provide. Yet, the relatively few people who do find their way to hospice, care always say “we should have done this much sooner”.
In general, people hearing the words ‘hospice’ or ‘palliative care’ think the care is provided to ease a person’s dying. In reality, the focus of hospice and palliative care is on living well under the circumstances of having a serious illness. Often the diagnosis and treatment of cancer means that we change our view of ourselves and become “patients”.
Palliative care helps us maintain our personhood so that the illness is only a part of who we are and not the whole. So when we do have the courage to read about palliative care, we find the focus is on living, describing quality of life, living as actively as possible and even prolonging life. Research has shown that palliative care provided alongside oncology care improves quality of life as reported by the person living with cancer, results in lower rates of depression and some extra time compared to patients only receiving oncology treatment. So the message is don’t agree with your oncologist, when he or she says “it’s too early for palliative care.”
How does palliative care achieve this? The first step is to listen to the person living with cancer, what are your wishes and preferences for care? What kind of person are you? What are you hoping for? Palliative care helps to distinguish the fixable from the non-fixable. If the cancer has spread and is no longer curable, palliative care doctors and nurses will make sure that the physical effects of cancer are controlled. Cancer patients can be completely pain-free, without distressing side effects (except for constipation which needs to be carefully treated).
Too many doctors and patients think that if you have cancer, you will have to endure pain. This is a fallacy. If your oncologist is not able to control your pain, it is essential that he refers you for palliative care or to a pain specialist to control your pain. The palliative care doctor will work with you to make sure you are completely pain-free. This can be achieved within 2 days and the short-term side effects of pain medication will wear off over a week so that you can be active and enjoy your family and social life again.
Palliative care doctors will also ask about other uncomfortable symptoms and make sure these are also treated. The palliative care team also listen to other concerns and help you to find emotional balance, considering the roller-coaster ride of dealing with cancer and all this means in our lives.
Read Amy’s palliative care story to find out how palliative care helped her live an active life with stage 4 inflammatory breast cancer.
or watch the You tube clip “you are a bridge” that describes palliative care.
Blog post by Dr Liz Gwyther