World Hospice & Palliative Care Day 2019
This year, we are recognizing World Hospice & Palliative Care Day to honor those who are affected by life-limiting illnesses, like cancer, and highlight their rights to access supportive care. Our 2018 Impact of Cancer survey started the conversation and encouraged people across our communities to open up about their ideas around hospice and palliative care. Results from the survey found that 30% of people who took the survey didn’t know what palliative care was at all, and another 20% thought palliative care was the same thing as hospice. Despite this confusion, 65% of those who knew what hospice care was viewed it in a positive light.
To gain a clearer understanding of these types of supportive care, we sat down with BladderCancer.net advocate Anita Brown to talk about her experiences and beliefs around hospice and palliative care. Anita has been a passionate advocate for all cancer patients to more openly and comfortably express their end-of-life wishes through her work with the organization Dignity in Dying and her own experience as a home health care worker.
My experience with palliative care
My own personal experience with palliative care was shortly after I was diagnosed with advanced, small cell bladder cancer. Through my doctor, I requested some support for both myself and my family. We were referred to Macmillan, the UK’s leading cancer charity, who provide support to those who need it.
On my first visit, I met “my” nurse who informed me that she would be with me throughout my entire journey, which was comforting. Over the years, we have built up a strong relationship. She knows my needs and wants. She knows how I feel about being sedated at “the end.” She is also there to talk about any worries that we may have, as a family, and to help us through this time.
Misconceptions about palliative care
I think one of the misconceptions about palliative care is that it is given towards the end of life, but this is not strictly true. Palliative care can be given at any point of the journey, from diagnosis onwards. I feel that when the word “palliative” is used, it strikes fear into people, and they believe that they are near death. It is very misleading.
Palliative care, in my eyes, is about providing the support to those who need it, mind, body and soul. It’s about taking a holistic approach and helping each person live life to the fullest while they can. It’s about addressing the emotional and practical sides of living with cancer.
The stigma behind death
On the other hand, hospice care is more focused on end-of-life care and supporting individuals and their families at that stage. In recent years, hospices have become far more open about their services and this, I feel, is a good thing. They aren't gloomy, depressing rooms but rather a happy and peaceful place for patients. All are welcome there and if you are curious about what hospice looks like, you are encouraged to go and have a look for yourself.
There is also still a stigma behind death and speaking about it, although we are getting better at expressing our wishes. We need more people to be open and honest about death and dying. For most people, it’s a taboo subject, and no one likes to speak about it. However, the only way that we can raise awareness IS to speak about it.
Hear more from Anita about her personal journey with terminal cancer and beliefs on end-of-life care here.
Support for the whole family
Most hospices now have the means to help and provide support for the family of the patient as well as the dying patient, offering reflexology, massage, and aromatherapy. They have expert medical care and have been trained and educated on how to make the dying process less stressful for all involved.
Public perception matters
I am glad to read that most people nowadays think of hospice in a positive light. Public perception is vital to the running of these services as many rely on public donations to keep them in operation.
It also doesn't surprise me that, despite the confusion, hospice and palliative care are seen as a positive thing. I think we all have romantic notions about our deaths and how we will die. We all want a peaceful, pain-free death, but sometimes the unforeseeable happens. Hospice care is there to support and provide comfort no matter what.
Hear more about palliative care and hospice
If you’re interested in learning more about palliative care and hospice and how to integrate supportive care into your treatment plan, talk with your healthcare team. To hear more from the community about their experiences with palliative care and hospice, check out these articles:
How long did you wait before telling others about your diagnosis?