Over 30 years ago, I had the honor to work with Elisabeth Kubler-Ross. At the time, concepts like palliative care and hospice care weren’t well known. In fact, through her book, “On Death and Dying,” it was Elisabeth who started to bring the conversation about death and dying into the open.
Her groundbreaking work changed the lives of so many people – including myself – and her insights are still a central part of the training that medical professionals receive.
Based on my work with Elisabeth, I wrote my own book about hospices, called “The Hospice Alternative, Living with Dying.” With few hospices in the U.S. and only a handful in the U.K., my book was one of the first to touch on this topic.
Since this is an important topic for many women in our community, I wanted to look into how things have changes in the years since I wrote my first book.
Fast-forward 3 decades and I found myself interviewing Claire Henry, who is the CEO of the U.K. based National Council for Palliative Care (NCPC) and Dying Matters. I hope that you find my interview with Claire Henry useful and inspiring.
Claire started her career as a nurse and has worked with end-of-life organizations for her entire life. She was awarded the prestigious British MBE award for her work in this area and is one of the world’s leading experts on death and dying related topics.
During our interview, Claire and I discuss the many misconceptions that people have about palliative and hospice care.
The NCPC was established 25-years ago to help improve end-of-life care for people of all ages. It works with governments, charities, medical teams and caregivers to facilitate conversations about death, dying and bereavement.
Ultimately, it is an umbrella charity for people involved in palliative, end-of-life and hospice care in England, Wales and Northern Ireland.
Clare explains that the term “palliative care” describes a wide spectrum of activities that are intended to support dying patients. These activities include keeping the patient comfortable, helping families to stay engaged and informed and helping everyone involved to deal with the inevitable emotional issues that arise during this difficult time.
In essence, the focus of palliative care is to help facilitate the best possible quality of life for terminally ill patients, their family and their friends.
Hospices used to have a narrow focus; they were places were patients went to spend their last days when their medical treatments had ended. As such, they were primarily used by patients dealing with cancer.
Claire explains that, in today’s world, hospices have a role in the community, not just within their walls. In addition, many patients who are admitted to hospices choose to spend time at home, with their families.
Hospice care used to be focused only on the patient. Now it is expanding its focus to help the family and friends of terminal patients. This is good for everyone. After all, patients benefit when those closest to them understand how to interact with and support them.
The NCPC supports a range of people who are involved in end-of-life care. This includes nurses and caregivers. For example, palliative teams often offer support to home care staff.
This is especially important for patients who are dealing with Alzeheimer’s or other forms of dementia. These patients often stay at home, even when their symptoms become apparent.
The NCPC and Dying Matters are doing important work in the U.K. and setting a positive example for organizations in other parts of the world. If you are helping an aging parent or dealing with the illness of a friend or family member, I hope that you find my interview with Claire Henry useful.
Have you had an experience with palliative or hospice care that you would like to share with the community? What advice would you give to someone who is helping someone with a terminal illness? Please join the conversation.