By Aleisha Orr
People with insight into the complexities of bereavement are questioning whether greater consideration is needed around how care is delivered, including the role of GPs.
The release of a WA Government document earlier this year canvassing bereavement support after an expected death has been welcomed by many, it has also prompted wider discussion.
The framework was designed to provide a strategic guide for services providing end-of-life and palliative care in supporting bereaved families and carers in such situations.
Dr Margaret Sealey, a thanatologist and a member of Palliative Care WA spoke to Medical Forum about how her work led her to form the view that bereavement care would benefit from being separate to palliative care, while the RACGP’s Dr Joel Rhee spoke about challenges GPs face in providing such care.
Dr Sealey studied psychology and says she was driven to carry out her PhD in the area of palliative care out of frustration with how bereavement was dealt with.
She spent decades working in palliative care and recalled weekly meetings.
“They’d say, ‘right Mr Smith, he died, he was in bed two, right…Mrs Smith, oh, yes, I remember Mrs Smith, yes, she was crying appropriately so we don’t need to follow her up’,” she said..
“The psychologist part of me thought I’d no sooner look at somebody and assume to know what was going on in their head and their heart than I would fly to the moon.”
The framework
Bereavement support was recognised as an essential component of end-of-life and palliative care services in the State’s current end of life and palliative care strategy released in 2018 and this is what prompted the new framework.
It also follows the 2021 introduction of the legal voluntary assisted dying process in the State.
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The document is not designed to be a clinical guideline, instead it aims to increase awareness and understanding of the service considerations associated with the provision of bereavement support after an expected death.
Considerations touch on person-centred and equitable bereavement support for the family and carers of those who die from an expected death across diagnoses, cultural backgrounds, and locations within the State.
They highlight that such support should be delivered in a coordinated manner, that all staff dealing with family members should have an understanding of bereavement, and that communities should also be supported and empowered to be part of grief-related support.
However, the framework itself notes “Bereavement services are seldom recognised as part of the clinical workload because the recipient is not an admitted patient of the palliative care services.”
Dr Sealey says bereavement care has always been seen as part of palliative care.
“It’s in the World Health Organization definition, in the national palliative care standards, it’s in all of these policies, yet it’s totally unrealistic because services need to stick to doing what they do best, which is palliative care and end-of-life care.
“Yes, the families and loved ones should also be a part of that care, but palliative care services don’t have the expertise to do that, they don’t have the funding to do that.”
She said that while palliative care and bereavement support were related, they were not the same, and there needed to be a whole infrastructure around bereavement care.
Extensive research on who needed bereavement care and what supports were necessary, had also been done in recent years, so the evidence already existed.
GPs part to play
The framework notes “primary care should be recognised as best placed to provide access to specialist therapeutic support”.
Dr Sealey says GPs are the frontline of healthcare and the “prime” people to track and assist bereaved people in how they work through their grief, given they are already likely to be seeing them for other health matters.
While the framework suggests assessment and pre-screening around bereavement start at first contact with palliative care, Dr Sealey suggests GPs were better placed to do the pre-screening and follow up.
Dr Sealey says she does not think the framework goes far enough by simply listing service considerations against the end of life and palliative care strategy priorities.
“The problem is we don’t have a service pathway here, it’s up to each individual professional to decide where to send people.”
Dr Joel Rhee, chair of the RACGP Cancer and Palliative Care network, says implementing practical models on the ground would be the obvious next step beyond the framework.
He says while the document is a good start there is room for improvement, much of it around principles and priorities, but the other issue is actually implementing practical models.
Connecting the pre-screening of family and loved ones done within palliative care settings to GPs and services was “tricky”, he said.
“Who do they pass the information to? Because the person who may require further support later with bereavement issues are going to have their own GP, who is probably different to the patient’s GP.
“The palliative care service will need to have a consent process so information can be passed on to the patient’s GP and sometimes that can be challenging. It’s something that needs careful consideration and forward planning.”
He wants to see a secure national messaging system created where public health and palliative care services can be linked.
When contacted about referral pathways, the Australian Government Digital Health Agency referred Medical Forum to the WA Health Department.
Prolonged grief
The framework states that “there is an ongoing need throughout to identify family and carers who are at risk of severe or prolonged grief and need professional treatment and support”.
Dr Sealey says if family or friends were after more than a year after their loss “still disabled by their grief to the point that they can’t go back to work, they can’t earn a living, they can’t get out of bed, they can’t socialise with other people, then they need proper assessment and treatment by a psychologist or a psychiatrist.”
However, in Dr Sealey’s research she found that even the service that recorded the longest contact with family of those who had died kept in touch for five months at the most.
“If, six months after a death, you’re running an inventory to check if somebody’s got prolonged grief or some sort of problem, you don’t have a file to put that into.”
At the same time, she says, many family members do not want to be contacted by the service that they associate with the end of their loved one’s life and for those reasons she did not think palliative care services should “be going anywhere near prolonged grief”.
Understanding grief
Dr Sealey says a better general understanding about grief was needed in the community in order for more meaningful community-based support, including support groups and grief cafes.
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Dr Sealey says many people, even within the health system still “bought into the five stages of grief as a model for bereavement care,” which research has found to be scientifically inaccurate.
“That can keep them stuck in their grief, because everybody’s saying, you should get to acceptance at some point. They might acknowledge a new reality but to accept, that’s quite a big ask,” she says.
She adds that better understanding that different people experienced different types of grief in different situations is also required.
Challenges as a GP
Dr Rhee acknowledges the importance of the GP in bereavement support while noting the challenges experienced.
Sometimes the GP may not even be aware of a bereavement issue, because the chances that they were also the deceased person’s GP are not high, he says.
“They wouldn’t know unless their patient tells them, so there can be challenges, but asking questions, taking time to just ask how the patient’s going, how are they coping? Those common-sense questions would be useful for GPs to do,” he explained.
“People may not be aware that what they’re experiencing right now may not be quite normal, or what may be expected for a person who’s experiencing grief.”
Dr Rhee says that while a GP having good links with local mental health services can be of assistance, issues associated with accessing such services play a role in getting support in situations of prolonged grief.
“When you look at the framework, priority three is about having referral pathways, and it talks about primary care providing access to mental health providers, but sometimes that’s easier said than done.”
Prolonged waiting lists for psychologists and counsellors as well as associated costs, including gap fees, can delay or prohibit the delivery of those services.
“GPs or nurses within clinics are often providing that sort of counselling and support, basically holding the patient or holding the person and making sure that they’re socially and otherwise supported while waiting for those mental health services to kick in,” he says.
Service delivery
Silverchain has operated palliative care services in WA for more than 40 years and has a partnership with the WA Government to provide them.
While the organisation did not say whether it would support a separate infrastructure around bereavement support outside of palliative care services, its WA executive director Renae Lavell told Medical Forum that “bereavement support is an essential component of providing comprehensive and compassionate palliative care”.
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“To ensure continuity of care, bereavement services are initiated by the specialist palliative care provider. Having an understanding of the client’s journey – and an existing relationship with the family – can make a significant difference during the early stages of grief.”
While she acknowledges a holistic and coordinated approach is required, especially because the onset of grief may not fully surface until after their loved one has passed and their contact with the palliative care provider has ended, she did not specify what communication or referral pathways were currently in place to ensure this is facilitated.
“Together with their specialist palliative care team and their GP, we can help facilitate additional support and referrals to psychiatrists, counsellors and psychologists as needed,” she says.
WA’s Department of Health was contacted for comment and has yet provided a response.
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