I am pleased that the CareSearch Part of Life campaign is facilitating the discussion about death being a part of life. We know that this can be a difficult conversation to have, much like parents and teenagers talking about sex and contraception – neither party feels entirely comfortable to talk about it! Irvin Yalom, the American existential psychiatrist, accurately describes thinking about death: “It’s like trying to stare the sun in the face: you can stand only so much of it.” This is one of the many reasons that death and dying have become taboo subjects in many cultures.
The conversation is not easy, but it is important to the planning of care. If you were “sick enough to die”, what treatments would be acceptable and where would you want to have them? People are living longer with chronic illnesses, due to the advances in medicine, but at what cost? We certainly can’t stop you from dying, so people need to be informed about their choices and the limitations of what medicine can do. Being honest in these consultations is vital to respecting your wishes as much as possible.
Living with an illness is one thing but being told you are dying from it is another. Treatments offer people hope amidst the uncertainty of the future. Sometimes doctors may offer more treatment to maintain hope, despite the small chance of any significant improvements. In these cases, the evidence shows that people would prefer an honest conversation about their options, rather than holding onto false hope.
Early palliative care involvement can help to support you and your family during this difficult time, working alongside the healthcare professionals that are guiding your care. It can begin a process of communication that both informs care and plans for the future. However, asking for help can be the biggest step, so it’s important to recognise what palliative care is and what it can do for you.
Palliative care considers you as person with an illness, addressing your physical, psychological, social, and spiritual needs. Best practice person-centred palliative care ensures that you are treated as a whole person, fully included in your care, and able to live your best possible life until you die. This care includes the provision of bereavement support to your caregivers. CareSearch provides an invaluable resource for evidence-based palliative care that underpins our practice. Other resources of interest include Palliative Care Australia, CarerHelp and the Australian Centre for Grief and Bereavement.
People with a new diagnosis of a life-limiting illness need to know that there are specialist palliative care services to support them and their families. These services also support other healthcare professionals in the hospital and in the community. Specialist palliative care can be involved from diagnosis of a life-limiting diagnosis, according to the need at the time. Asking about palliative care may be a timely reminder for your doctor to refer. However, there are many public and professional misconceptions about palliative care, so you may need to persist. A consultation provides a quick way to dispel the myths that exist.
Social aspects of care include supporting the main carers and family. We encourage people to appoint a medical treatment decision-maker, and that they attend appointments together as much as possible. Carers often need a break, and this may be related to the duration of caring for a person. However, it may also be due to worsening symptoms or deterioration in the person’s condition that may herald the dying process. Palliative care services can provide an opportunity to deal with the issues and facilitate respite for the carer.
Although caring for someone at the end of life can seem daunting, with the right planning and support, dying at home can be achieved. However, sometimes dying at home can be too problematic and palliative care units can permit a safer environment for family members to be part of the team supporting end-of-life care. We understand that this may challenge the sense of duty that many carers feel, but we also recognise how these experiences can impact carers in bereavement.
I hope this information helps you to gain the support you need. I have included three links below that may be of interest to further understand palliative and end-of-life care.
- Care Beyond Cure. LIFE Before Death series
- Moments That Matter. Palliative Care Victoria
- What is it like to die? Hospice NZ
Adjunct Associate Professor Leeroy William, Eastern Health Clinical School, Monash University
Clinical Director of Supportive & Palliative Care, Eastern Health
President Australian & New Zealand Society of Palliative Medicine