Good quality hospice, palliative and end of life care are vitally important. The difference that this care can make to the patient with a life limiting illness and their family the end of their lives is monumental. Palliative care is relief of suffering, be it physical, emotional, psychological or spiritual, and supports the patient and their family throughout their illness, to death and into bereavement.
Around the world, millions of people suffer needlessly and die in a state of excruciating pain and spiritual and emotional suffering, due to a lack of awareness of palliative care.
The Global Atlas of Palliative Care at the End of Life reports that only one in ten people who need palliative care receive it. Despite this great need, few patients are aware that something called palliative care exists, let alone that they are entitled to it.
Perhaps even more disturbing is the fact that doctors either are not aware of palliative care, or they hold misconceptions about the discipline.
A report on cancer care released this week by the American Society of Clinical Oncology mentioned palliative care only twice in the whole document and did not mention hospice at all. Few countries around the world recognise palliative care as a medical speciality, and many undergraduate medical and nursing education programmes include either a few hours of palliative care education, or none at all.
Myths about hospice and palliative care abound, and prevent patients from accessing this essential service. In an article in New American Media, Richard Springer wrote about the myths that persist about hospice and palliative care among Indian immigrants in the US. Dr Suresh Reddy, section chief and director of education of the Department of Symptom Control and Palliative Care at the M.D. Anderson Cancer Center in Houston, Texas, interviewed for the article, said: “…a lot of Asian immigrants don’t even want to hear the term hospice. They definitely view that as a death place.”
A study published this year by Murray et al. found that: “Palliative care as a concept may be too inextricably linked to imminent death to be acceptable and appropriate for these patients.” The authors went on to suggest that: “(Palliative care providers) must diversify palliative care provision to meet the range of holistic needs of all patients approaching the end of life.”
A huge part of raising awareness is communication. Writing, speaking, or making films about the importance and benefits of good palliative and end of life care helps to share the understanding that has been brought about by the experience of this essential package of care. In an extremely eloquent blog about a friend’s experience of palliative care, Dr Suzanne Coven describes palliative care as an empowering process. She explains how palliative care not only controls pain and other physical symptoms, but that it also shares with an otherwise lonely, frightened and powerless patient a set of practical skills to cope with and take control of their own death.
Dr Coven goes on to remind doctors that palliative care is not only for patients at the very end of their lives, and calls on them to: “Refer patients early, at diagnosis.”
Kay Sales, an Australian woman diagnosed with a very aggressive form of cancer, had a powerful message in a video produced by Palliative Care Australia. She said: “I believe that the moment a person is diagnosed with a life threatening illness; that would be the ideal time to link them to palliative care.”
Without awareness of palliative care among doctors and patients, people will continue to suffer unnecessarily. It is vitally important that we continue to raise awareness of palliative care, not only to avoid the unspeakable tragedy of patients dying in preventable pain, but also to empower patients to take control of this hugely significant journey and to truly live as fully as possible until they die.
Be sure to read the other articles on raising awareness of hospice and palliative care across the ehospice editions.
Also read the many articles we have published which address the myths that surround hospice and palliative care.
What you can do to help
Help us in our quest to spread the word on the importance of hospice and palliative care by sharing the many awareness-raising articles published across ehospice today with friends, family or colleagues. Send them a link via email, re-tweet our articles from @ehospicenews, or like our Facebook posts. Your small act of support can help make a huge difference!