LIFE Before Death #28: Care Beyond Cure
Short Film 28 of 50 in the LIFE Before Death documentary series about the global crisis in untreated pain and the dramatic life changing affect palliative care services can deliver to patients and their families around the world.
In “Care Beyond Cure” we learn the importance of good care beyond cure, where illness cannot be cured and patients need good quality care when they are facing end of life. We learn that health care systems are generally not set up to deal with patients in this way, instead they focus on intervention, care and treatment, but there needs to be focus beyond this when cure is not possible.
“Part of the mentality of medicine is a fix-it mentality, we are living in this sort of consumer society where there are black and white solutions to things, and if you can’t fix a problem then you don’t want to deal with it because it’s not something practical. I think people have put a much lower priority on the caring aspects of community, where we are now facing up to chronic disease, problems that can not be fixed so we have to live with them, and how do we live better with them, so I think pain control gets into that category of things,” reflects Dr Cynthia Goh (Singapore)
Eugene Murray (Ireland) explains that there tends to be a culture in health care systems that health is about curing people. “For example, you take cancer, in the developed world, 50% of people who get cancer die within 5 years, so death and dying are an integral part of the cancer journey for almost the majority of cancer patients, now that’s not a pleasant thing to be saying but so much of the dialogue about cancer care and integrated cancer care, rightly focuses on intervention and care and treatment but so little focuses on care of the dying.”
“Modern medicine, till palliative care came into force had precious little to offer if cure was not possible. But that’s forgetting the basic purpose of medicine, which is not only to cure when possible, but also to relieve symptoms and to comfort the patient as much as possible,” explains Dr MR Rajagopal (India).
Dr Kathleen Foley (USA) continues; “When we use words like ‘quality of life’ you know people who have cancer who think that they could be cured, will say to you ‘I don’t care about my quality of life, I care about my quantity of life’. Then there’s a point at which they then realize that their quantity of life is going to be shortened and then they do care about their quality of life.”
Dr Jim Cleary (Australia) reflects on a personal experience he had with a patient facing end of life who requested physician assisted suicide, Dr Cleary explains that by listening to the patients concerns and working with them to relieve their pain the patient was able to make a more informed decision and was kept comfortable. As a result he had very good quality of life and was kept relatively pain free until he died, allowing him to fully engage with his family during his final months.
Dr Charles Von Gunten (USA) concludes; “Human illness is not just an aberration in the DNA, a bacterium that gets in the wrong place, a malfunction of a muscle somewhere. It’s a person experiencing the consequences of that disease. Medicine, good medicine takes care of someone in their physical, emotional, practical and spiritual fears, those are all the responsibility of a doctor, they’re all the responsibilities of a nurse, and the health care system as a whole.”
Featuring: Dr Cynthia Goh (Singapore), Eugene Murray (Ireland), Professor Michael Cousins (Australia), Dr Natalya Dinat (South Africa) Dr MR Rajagopal (India), Dr Kathleen Foley (USA), Dr Jim Cleary (Australia), Dr Frank Ferris (USA), Dr Charles Von Gunten (USA).