Supporting families and providing end-of-life-care

Mark Boughey

1/11/2023 4:10:22 PM

GPs play a pivotal role in the care of people with advanced disease, writes palliative care specialist Associate Professor Mark Boughey.

Close up of two elderly people holding hands.

As a palliative care consultant, I know that the patient’s end of life experience depends on the quality of the support of the care team around them.
This includes the GP, the community based palliative care team, nursing services, other family support workers and health practitioners, and the family (or primary carer).
GP’s, and their clinic, often have the advantage of an established relationship with the patient and family, and are well placed to assess the needs of both.
Having an established relationship can also be an advantage during difficult discussions. We know that most people in Australia want to know their prognosis and plan for their end-of-life care.
We also know that families who are aware of the prognosis and are more prepared for end of life, ultimately have better outcomes.
With that in mind, I encourage GPs to have the following conversations and put in place the following supports.
Discuss the possibility of death and dying
Having this conversation will assist the patient and their family to think about what is most important to them at this time, helping them to prioritise and prepare.
It can also assist the family to make decisions on behalf of the patient, if required, such as discussing where the patient should be cared for and whether the family are in a position to care for the person at home.
It is important to consider the main carer’s health and the availability of services in the area. Ideally this is an ongoing conversation and checking in on the families’ health and wellbeing is also a priority.
Put services and supports in place
If the patient wants to be cared for at home, they will need lots of support. This means family (or friends) who are able to be around the majority of the time to provide care.
However, it is also important to get additional services in place early, so talk to the family about registering for My Aged Care, local council or community services, or paying for a private nurse or support worker to assist.
Engage palliative care  
Refer the person to the local community palliative care service, or their equivalent regional, rural or remote service and discuss this with the patient and family.
People can be fearful of palliative care, so it is useful to remind them that it is a way of maximising quality of life and important to be in place early to ensure that the patient and family are well supported.
Palliative care is not just for the last weeks of life, but useful from the point of diagnosis of advanced disease. If you have an established relationship with the patient and family, it may be easier for them to have you introduce palliative care.
Provide the palliative care service with any information that they may find useful in working with the patient and family. Check the National Service Directory for local providers on the Palliative Care Australia website. 
Offer the family access to information to help prepare them for the caring role and for the dying process.
CarerHelp is a national website with trustworthy information and resources for families to help prepare them for end of life care. There are videos that carers can watch and many factsheets and templates that can be printed and given to families.
There is information on symptom management, recognising dying, caring for a dying person, and what to do after the death. There are also factsheets in nine languages other than English, as well as resources that cater for those who identify as Aboriginal and Torres Strait Islanders, as well as LGBTQIA+ community members.
A person at the end of life may no longer need some of their medications and supplements.
The priority should be comfort in the short term, rather than long term health. It can become more difficult to swallow so stopping any unnecessary medication can be a relief for many patients.
Also, as the priority is comfort, you can reassure patients and families that there is no reason to be fearful of issues around addiction or use of opioids. It may also be that you will need to consider giving some additional prescriptions in advance so that the family can be prepared for those last days of life. Encourage families to fill prescriptions before weekends so that they are prepared.
Symptom management at the end of life
If symptoms are not well-managed and causing discomfort or distress, then seeking advice from a palliative care professional is advised.
GPs can directly call their local palliative care team, or the consultant involved in the patient’s care. Alternatively, there are also often palliative care advice lines set up in many areas attached to hospitals.
Be prepared for the last few days
The patient’s GP may be required to do a home visit at the time of death or certify the death. However, community palliative care teams are also able to do this, so having them involved can be useful.
Providing care to someone at the end of life can be challenging, but also extremely rewarding.
Knowing that you have supported a family through a difficult situation can bring meaning to your role.
Further information on palliative care resources and training options:

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