A palliative care plan can help people to live as fully and comfortably as possible as they approach the end of their life, and are a way to keep family and health professionals informed about the care the person expects to receive.
Ideally, the plans are written when the person is well, where decisions can be thought through and carefully considered, but all too often conversations about these topics occur in times of crisis.
A question that emerged recently at the royal commission was how involved family should be in the preparing of a loved one’s palliative care plan.
Is there a legal obligation for them to be involved, and what are the practical reasons for family to help in the creation of a palliative care plan, or at least understand its contents?
Daughters did not know about palliative care plan
The royal commission heard the case of a woman who was living with dementia. When she moved into an aged care facility, the woman’s daughters were informed by staff that their mother had had a meeting with a nurse, and created a palliative care plan.
One of the daughters was the mother’s power of attorney, and was disappointed she wasn’t involved in the process so she could be better informed about her mother’s care.
The daughters told the royal commission, “A palliative care nurse from Greenwich Hospital… saw Mum and drafted a palliative care journey.
“I was not told by (the operator) in advance about this appointment.
“As Mum’ s enduring power of attorney I would have expected (the operator) to contact me to let me know that this appointment was happening.”
Having someone there creates better understanding and provides support
At HelloCare, we decided to look into this question further, and find out what is the ideal process when an older person wishes to draw up a palliative care plan.
Kate Reed, Nurse Practitioner National Clinical Advisor with Palliative Care Australia told HelloCare, “Like all appointments that involve discussing healthcare plans, it is important that the person with palliative needs is given the opportunity to nominate a person of their choice to be with them as support and to be another set of ‘ears’ as part of the discussion.
“While it is not essential that they are there, it does help ensure that there is a better understanding of the objectives of the discussion, provides a further voice for the person with palliative needs, and an understanding of the care plan that is being put in place.
“Having a close family member or carer involved helps not only support their loved one, but also allows for less chance of misunderstandings as changes occur in the person’s condition.
“Involving the family or carers in the plan early will ideally give them the confidence of knowing what is happening and what is likely to occur and they can then communicate this to the wider family or friend group.”
It’s best to plan for the end of life when the person is still well
Linda Nolte, Program Director of Advance Care Planning Australia, told HelloCare, “This case really highlights the importance of planning ahead, undertaking advance care planning when a person is well and ensuring that the relevant documents are in place.”
These conversations too frequently happen in times of high stress, she said, rather than when the person is well and can clearly articulate their values and preferences.
“In this situation it would have been useful for family and health professionals to have access to the woman’s advance care plan or Advance Care Directive to guide her palliative care plan and ensure she received the care that she would have wanted.
“Ideally, the woman’s daughter, who was her legally appointed substitute decision-maker, should have been given the opportunity to participate in these conversations.
“However, if the health professionals deemed that the woman still had the capacity to make her own treatment decisions, contacting family members may not have been deemed necessary.”
In the case of reduced decision-making ability…
Ms Reed said when a person has reduced decision making ability, where there is an existing enduring power of attorney, it is a requirement that they are part of healthcare decision making.
“It may be that this has to be done by other means than in person, to ensure that the patient has timely care provided to them and there are no delays,” she said.
Why are palliative care plans important?
Ms Reed said, “A palliative care plan is essential to allow a person with palliative needs and their carers to have an understanding of what can be expected over the time in which they are living with their condition and what is likely to happen when they deteriorate or if their needs suddenly change.
“This is when goals of care can be discussed and decisions such as where do they want to be when they are actively dying and whether or not they want to go to hospital can be made.
“Conversations about likely symptoms, possible medications and who will be involved in their care at the end of life are also important to have at this time.”
Ensuring the paperwork is in place
The documentation for advanced care plans is not always available at the point of care when they are needed, which can result in people not receiving the care that they want, Ms Nolte said.
Advance Care Planning recommends Advance Care Directives be uploaded to My Health Record, and that family members and health care professionals also be given copies.
What to do if you’re worried about a loved one’s palliative care
If family become concerned that a palliative care plan has been made without their involvement, or that a loved one is not receiving the palliative care they need, they should firstly speak to the care facility and set up a meeting.
They can also seek further advice from their state Palliative Care Australia or other carer advocacy organisations such as Advance Care Planning Australia, Older Persons Advocacy Network, or Carers Australia.