Thoughts around end-of-life planning are something we may not consider every day, but for some people, this is the stark reality facing them.
Being told you have a life-threatening illness and possibly only a short time left to live is news nobody ever wants to hear. Some people may have years to prepare, but for others, the end comes far more quickly.
The way people respond is unique, but fear of the unknown, feeling like a burden on loved ones, and anger or depression are emotional symptoms people in these situations often experience.
Palliative care is provided to a person suffering with a life-limiting illness that will in time eventuate in their death. For these people, the focus becomes optimising the time they have left and providing them with adequate resources and support.
Sarah Morse has been a Registered Nurse for more than twenty years and specialises in Palliative Care and Oncology. Sarah has first-hand experience providing comfort and support to families and individuals who are facing a terminal diagnosis.
She says it is important for health professionals and members of the family to ensure the topic of dying is raised, because quite often families don’t realise, or struggle to come to terms with the extent of the condition. “Empowering the patient and families with the information they need aids in their understanding and processing of the diagnosed condition,” she explains. “This is important to ensure patients and families have a choice in how they are cared for and, when the day comes, the kind of farewell they want.”
Often relatives and patients are scared to have conversations surrounding death and end of life planning. Sarah suggests people start by asking questions such as: ‘Do you want to talk about this?’ or ‘Who would you like to talk about this with?’ This way, the patient is given control over what and how much they wish to express.
However, these sensitive conversations should be balanced with lighter topics, enabling the patient to remain focused on what they love to do, and as much as possible utilise the time they still have.
There are also logistical questions to work through. Some patients may wish to be cared for and eventually die in the comfort of their own home, for example, while others might prefer to be in hospice care or hospital.
Before making this decision, it is worthwhile having conversations between the patient, family members, and health professionals to understand what the options are.
It’s worth noting that caring for someone at home can be exhausting for all involved, so it is important to know when to call for help, and how to get the right support in place.
In Australia, both nurses and volunteers provide training and education for the nominated carer to answer their questions, impart wisdom, and be available for ongoing care and support.
Reinforcing this approach, a report released by the UK National Institute for Health and Care Research found tailoring resources and information specific to both the condition of the palliative patient, and the environment of the home they are in, allows carers to better manage home-based care confidently and safely.
Closer to home, services like Palliative Care Southeast, based in Melbourne, work to ensure the quality of life for those individuals with a life-limiting illness and their families is strengthened. Their initiative, known as The Weavers Carer Support Program, is led by volunteers who have experience as a carer themselves.
In summary, caring for a palliative patient is no easy task. Accepting that your loved one will soon not be with you is enormously challenging, but you are not alone.
Support exists, so don’t be afraid or embarrassed to ask for help. Make use of the many people, organisations, and resources that will help you come to the most appropriate decisions in these difficult circumstances.
1. Ask health professionals and those caring for you for the information you need to make informed choices around your end-of-life care options.
2. Don’t be afraid to have those tough conversations about the end of life, both with the person who is dying and with other friends and family members. If there are specific requests or requirements, especially those relating to the immediate care of the deceased person, these need to be documented ahead of time.
3. It may be helpful to ask a health professional what symptoms to expect as the patient declines, as these can be distressing for family members and need to be managed appropriately.
4. Don’t be afraid to ask for support, both from informal support networks such as family and friends, as well as health services, The Cancer Council, and other formal support networks. Consider creating a roster of loved ones to visit or assist at mealtimes etc, so that the burden doesn’t fall just on one person.
5. Remember that family dynamics don’t go away because someone is dying. In fact, they can often become amplified. Plan ahead on how these dynamics might best be managed and how they might be navigated.