GPs and palliative care: Frequently asked questions

Doug Hendrie

1/11/2018 2:00:55 PM

newsGP spoke with Associate Professor Joel Rhee, Chair of the RACGP Specific Interests Cancer and Palliative Care network, about GPs’ common questions regarding a complex issue in general practice.

Associate Professor Joel Rhee believes GPs ‘have an important role looking after people in their homes for the majority of care in their last period of life’​.
Associate Professor Joel Rhee believes GPs ‘have an important role looking after people in their homes for the majority of care in their last period of life’​.

Palliative patients often prefer home-based care. What does this mean for GPs?
It’s not necessarily that patients want to die at home – the set place where their breathing stops is a different issue. But they’d rather spend most of their last days, weeks or months of life in an environment they’re familiar with and that they have an attachment to, surrounded by people important to them and who love them.
For most people, that’s home.
GPs have an important role looking after people in their homes for the majority of care in their last period of life. I use the term ‘home’ broadly – it could be the house they’ve lived in for five decades, or could be a nursing home.
But most don’t want to spend the last six months of their life in hospital.
Are GPs going to have to do more palliative care as Australia’s population ages?
Definitely. People are getting older.
Death itself isn’t changing – everybody dies – but 100 years ago you’d probably die prematurely due to infectious diseases. Nowadays we live far longer and more often die from chronic or degenerative diseases. Heart disease, cancer, dementia.
The last months or years of life are spent dealing with chronic diseases. Basically, that requires care. And GPs are in an ideal position to provide that care.
What are the key things a GP should know before treating their first palliative patients?
What really scares GPs is not necessarily the patient as they are right now. But, in case they do deteriorate, GPs may feel uncomfortable about what to do.
If the pain gets a lot worse and the usual pain relief doesn’t work, what do you do? How do you deal with nausea, constipation, vomiting? If the patient dies at home, what does the GP do? And what do the patient’s family and relatives do once the person stops breathing? You may not have the experience to feel comfortable with it.
These are important questions, and if you don’t know the answer, you will feel uncomfortable. The most information I got in medical school was when a person dies, confirm the death and do the death certificate. That was all I got.
So GPs need to increase their knowledge base on how to deal with the symptoms and terminal care.
What should GPs know about terminal care?
It’s about preparing the patient and the family.
Some may not want to know too much about what happens after they die; that’s more a question for the family. Most people would be familiar with burials and cremations, the question they have is if their loved one dies during business hours, what do they do immediately? Do they call an ambulance? A doctor? Or do they call the police? People may not know.
Usually, you call a doctor who can issue a death certificate, and then call a funeral director. But what if your regular doctor is on holidays? Can others at the practice attend the deceased patient and issue the certificate? That depends on each state.
In short, GPs have to do some research. In New South Wales, for example, if you work in the same practice, you can fill in the death certificate as long as you have access to the clinical notes and you are comfortable in determining the cause of death – and it is not a coroner’s case for whatever reason.
Is palliative care more about managing physical pain or mental distress?
It’s everything. Studies have shown doctors are pretty good at managing physical pain, and many patients will venture that readily. Plus, you can see if someone’s in pain quite easily. But other issues are less visible. Mental health, or even spiritual, existential, or social issues.
Take social issues. Patients in palliative care are often functionally not doing well. They might be bed-bound and not mobile. That means the family or carer has to step up and look after them.
Because it’s a terminal illness, carers don’t feel they can complain about the stress or their own physical needs and their fatigue. They feel, “Well, my father is dying, I can’t complain”. But this isn’t good; carer health has an impact on the patient as well. So there’s that social aspect where caregiver needs are often missed.
For the patient, there are the spiritual and existential issues, with the fears around dying and the meaning that life had for the person. All of these are really important but often not addressed.
People talk about how doctors have become the new priests. We make it so you can come and talk to GPs about anything. So people who have spiritual or existential needs should feel they can come to their GP and talk about these things. But for palliative patients, many GPs might not feel comfortable talking about spiritual issues or life’s meaning.
One way to tackle these issues, existential and social, is by using an available assessment tool. These can be done by the patient with help from the carer – the doctor doesn’t have to ask. Many of these tools have psychological, spiritual and caregiver questions. It gives you the license to ask these questions to patients and carers without feeling like you’re intruding. And if you want to avoid the term ‘dying’, you can say, this is something I give everybody with a serious illness.

Patients often want to spend the final stages of their life in an environment with which they most comfortable – usually at home.​

Why do many GPs lack confidence in palliative care?
Many of us are not comfortable talking about death and dying ourselves. Plus, the average GP doesn’t do much palliative care, simply because not many of our patients die on a yearly basis.
It depends on the population you have. If you do aged care facilities, you’re going to have a lot more experience with people dying and you’ll become more comfortable. It’s simple – you feel uncomfortable doing something you don’t do much of.
The other issue is the training; we just don’t do enough palliative care training in medical school. You don’t really have to learn a lot about palliative care in hospital training, because if someone dies in hospital, you complete a death certificate and that’s it. But you do need it in general practice.
What does best practice home-based care look like?
It’s needs-based and multidisciplinary, with involvement of team members. It’s not just a one-person show.
The majority of people can be looked after by a GP, without requiring a lot of involvement from palliative care specialists. So GPs often lead a team. They get the practice nurses involved, community nurses involved, they might get a home care package to help with cleaning, bathing and toileting. Then you have the family or carer of the patient. That’s your main team.
And you may also get palliative specialists and nurses involved, as well as allied health professionals, either from the GP side or the palliative services side. Physiotherapists, occupational therapists, social workers, speech therapists, nutritionists. Plus, patients need to be supported even after hours, having someone they can call, so they don’t feel on their own. That’s the ideal situation.
How does a GP’s knowledge of a patient help?
Patients trust their GP, and GPs often have an understanding of their family and social situation. So that’s a real plus when you’re coming to help a patient to decide their treatment preferences and choose whether they are willing to be looked after at home, or whether they need to go into nursing home.
When GPs do home visits, it’s usually for people you’ve looked after for a long period of time. You feel a sense of responsibility, and you want to look after them until the end.
How can busy GPs fit in home visits?
Home visits are tough. What’s driving GPs is a sense of responsibility and loyalty to their patients. It’s definitely not the money, as home visits are poorly renumerated. Plus, fitting them in is a real challenge.
Many would fit them in at lunchtime or after hours. Others might block out time during day. What’s sometimes useful is booking regular visits every two weeks first thing in the morning. That way you’re not running late, you can go to the patient, have a chat. If it’s not going well, you can review their needs and help the patient. Doing this regularly can avoid urgent or after-hours home visits.
When is the best time to develop an end-of-life plan? What do they look like?
End-of-life plans are an evolving process. You develop them and you do need to revisit them, depending on what stage of the disease they’re in. But, basically, have those conversations as early as possible. Keep it gentle, focused on their goals and values, and put in some practical and planning suggestions.
Having that conversation is not confronting. You can just say, “You’ve got this illness and hopefully it won’t come too soon, but you may find it difficult to support yourself”. You might have someone with breast cancer who is still in treatment, who might say, “What’s this for?” But if their function deteriorates, you want to get help for them early rather than leaving it till later.
What tips do you have to help GPs navigate the system on behalf of their patients?
It’s best to put in an application to the Aged Care Assessment Team [ACAT] early, because there’s often a wait. So get them assessed early and, later on, you can upgrade the existing package rather than waiting for when they’re really needing support and the carer is about to lose it because they’re so fatigued. Get started early.
ACATs are really critical – they come and assess a patient’s care needs, recommend appropriate care, and can get a cleaning person coming along. They can help with meals, shopping, toileting, equipment.
Who can GPs look to for help?
I’ve found that palliative care nurses and specialists are lovely people. If they weren’t, why would they do this job? It’s self-selecting. And their motto is, they want to work with GPs and they’re happy to provide support and advice.
So if you’re unsure or unclear, rest assured that the local palliative care service will be supportive. If you’re stuck or have symptoms you’re not sure how to control, you can get them involved, get their advice and it’s really useful.
What resources do you recommend?
There’s an updated set of RACGP-accredited modules on Advance Care Planning for GPs now at The Advance Project, which count towards Quality Improvement and Continuing Professional Development (QI&CPD) points. 
The RACGP also has a number of relevant articles, including Advance Care Planning and When GPs need to write a death certificate.
The November issue of Australian Journal of General Practice (AJGP) focuses on palliative care and includes a number of articles to assist GPs.

ajgp end of life home-based care palliative care

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Dr Martin Bailey   2/11/2018 7:04:17 AM

Real life- 12 months waiting to access high care "package" - if living still
Carers allowance - has to be applied for online, full of difficulties- my daughter gave up after 5 visits to centerlink and having a refusal "no eligible foster children" when the application was for caring for her dying mother.