The 19th to 25th of May 1919 is National Palliative Care Week – a week to celebrate, acknowledge and thank everyone involved in palliative care for making a difference in people’s lives.
Palliative care is care that helps people live their life to the fullest when living with a life- limiting or terminal illness.
Palliative care identifies and treats symptoms which may be physical, emotional, spiritual or social. Palliative care is available to all people with a serious illness and their families, to assist in managing their symptoms and improve their quality of life.
Everyone’s priorities at the end of life will be slightly different. By sharing what matters most to you, you will be more likely to receive the kind of care and treatments you desire.
People should be proactive and tell their care team about what matters most to them, so their treatment can be aligned with their goals.
It is important for people to talk about their end of life preferences with loved ones and doctors.
Talking about dying won’t kill you. (Palliative Care Australia, 2019)
I am passionate about hospice care and will continually promote their work because I have seen first-hand how it can make such a huge difference to those whom they support. My story is fairly unique in that I had a long nursing career specialising in palliative care, much of that spent working in hospices but I am now in the situation whereby I am a patient in the palliative stage of my disease, low-grade serous ovarian cancer. I worked for many years as a Palliative Care Clinical Nurse Specialist (CNS) in the community for St Margaret’s Hospice but took ill health retirement a few years ago because my ovarian cancer recurred and I am now living with advanced, metastatic disease which means my cancer has spread to other parts of my body.
About a year ago I was referred to my local hospice, Oakhaven, for counselling. I felt a huge sense of relief to be referred because I knew that I would be able to access the most amazing support and resources. Hospices are very much about helping people affected by a progressive and life limiting disease to live their best life whether that be patients or their families. I remember the anxiety and fear that a hospice referral created in patients under my care as a Palliative Care CNS but once they understood what it was and what it meant, they felt that same relief as I did myself as a patient.
When most people think of hospice care they think of a building in which people are admitted for end of life care. During my nursing career I heard so many times from patients and their families that they thought the hospice was a place to die but this is only a tiny part of the specialist care that a hospice provides. Of course there are patients who die in a hospice but most of the work they do is about promoting life and living at home which is what I am focusing on today. The way in which they do this is through alleviating distressing symptoms, listening to difficulties that arise and finding solutions, giving advice and signposting to services to provide support at home, providing specialist palliative care in the community, providing support to loved ones, offering outpatient services such as day care or clinic appointments, providing physiotherapy and occupational therapy services, acting as an advocate for those needing it, providing peer support, just being there at the end of the phone on bad days and so much more.
Hospice services are very much about providing the care and support that each individual person needs and that can differ greatly. Most of the support that patients and their families receive is in their own homes but there are occasions when admission to a hospice in-patient unit is appropriate. Most admissions to a hospice in-patient unit are to alleviate very complex symptoms that are incredibly difficult to manage at home because of the need for continual assessment and adjustment of treatment. Once symptoms become more stable most patients will go back home. It wouldn’t be unusual for a patient to have several admissions throughout the palliative phase of their disease but the goal will always be to stabilise them in order for them to continue living the best life they can at home.
Whether patients are admitted for specialist palliative care or end of life care, they will find themselves in a place whereby there is such attention to detail, kindness, respect and love that it feels like an escape from the world. I know when I need more support that the local hospice will be a sanctuary for me and my family whether the support is via community services or in-patient.
So this week I salute all hospices and I urge everyone to support your local hospice because without them I know life for many would be unbearable.
Diane Evans-Wood, 2019