Law Talks Episode: Planning for palliative care – legal support and family guidance

Robyn: Good morning and welcome to another edition of law talks here on 4CRB. And today we’re joined by Bindy Marshall, an accredited aged care professional and aged care paralegal at Attwood Marshall Lawyers. Thanks for being here, Bindy.

Bindy: Thanks for having me, Robyn.

Robyn: Well, today we’re going to cover a topic that is probably one of the most difficult to discuss. Because no one really wants to think about death, let alone talk about it. Reports have shown that approximately 70 per cent of Australians would prefer to die at home. However, only a small percentage, around 15 per cent, actually achieve this.

So Bindy, to get this topic started today, what do people need to do to plan ahead?

Bindy: Robyn, end of life planning is never an easy topic to discuss but is one of the most challenging but important conversations that you can have with your loved ones. This can be an emotional journey, however having a plan and knowing your wishes can certainly reduce some of the stress involved.

These discussions can also bring comfort to those around you when difficult decisions need to be made, as you’ve already confirmed your wishes.

Robyn: Now Bindy, as you just said, this can be an incredibly difficult and an emotional topic for some. So how should you start the discussion?

Bindy: Look, there’s no right or wrong way to start this discussion. You need to be patient as it may take you and your loved one time to come to terms with receiving such a diagnosis.

It’s important to be open and honest with each other. This will make things a little bit easier. To help the conversation flow, it’s also important to have a list of questions written down, and you can make notes as you go talking through the questions together.

You know questions you could ask might be something like you know what’s my prognosis and what’s the potential time frame, what supports will be available to me, who will be able to provide the support, how will I fund the support I need, and is there government assistance available, who do you trust to make the important decisions for you and what type of treatment or interventions do you want?

You know, where do you want to palliate do you want to palliate at home, in hospital, in care, or in a hospice? It’s really important not to put a time frame on discussing these things. It may take a week or two for you to work your way through the suggested questions. And you may change your mind as your health declines.

Robyn: Yeah, Bindy, as you’ve pointed out, there is a lot to consider in these types of discussions. So, once you have started that initial discussion, what should the next steps be?

Bindy: Look my suggestion is to get your affairs in order. Review or draft a Will with a qualified lawyer to ensure you avoid all the complications for your loved ones once you do pass.

The DIY online kits do not capture all the information and it’s quite common for people to make things worse or more costly, or complicated for the estate, if you don’t consider all the aspects of a person’s wishes.

You know, ensure your enduring power of attorney is up to date and can be actioned immediately. That way it ensures as your health declines, your trusted person can look after your affairs for you and obviously in conjunction with the power of attorney, it’s really important to have an advanced healthcare directive.

Planning ahead ensures that you have a say and can give consideration to each question. It’s also really important for your support person, such as a trusted friend, family member or spouse, affords you the dignity to understand and honour your choices.

Robyn: Yeah. And it also takes those stresses and those pressures away from the loved ones or the support people, if you’re your wishes are clearly documented and very easy for them to follow. So palliative care aims to provide a patient with the means and the support to live the best quality life they can and to make the time the best use of time that they have for them and their family.

Are there different stages to palliative care?

Bindy: Yes, absolutely. Look, there’s four stages of palliative care.

Stage 1 is stable. What we consider stable, which is where you’re developing and implementing your care plan.

Stage 2 is unstable. This is where you can be adjusting the care plan and preparing emotionally.

A stage 3 is deteriorating. That’s when you shift to end of life care. So that’s things like pain relief, your doctor will be visiting you regularly.

And stage 4 is terminal. That symptom management, emotional and spiritual care.

Robyn: So Bindy, if someone wants to spend their last days at home, what should you organise?

Bindy: There are palliative care services, including social workers, counsellors, nurses, doctors, end of life doulas, ministers, priests, occupational therapy, along with other specialised services to assist you and to keep you comfortable. If you have a home care package, the chances the provider have specialised palliative care team on their staff is high.

The nursing staff can monitor your symptoms and assist with coordinating your care needs.

From the 1st of July, a new palliative care package will be available to provide further assistance or funding on top of your standard home care package.

Your GP is obviously going to play a crucial part in assisting you as your illness progresses. Most GPs will visit you in your home and it’s important to speak to your doctor about who you can contact if you can’t visit a doctor’s surgery to ensure that they do have someone on call outside office hours.

Robyn: Yeah. So Bindy, these supports sound great. And you did just mention that there’s been changes from the 1st of July to include new palliative care packages. But can you talk about how the costs work?

Bindy: Absolutely, Robyn. Often if you’re in a home care package they assist with mobility aids and equipment, and if you’re not on a home care package and require mobility aids or equipment, you can generally hire this for a small charge from a provider.

An OT can also assist with a review to help you prepare your home. With making practical modifications such as organising handrails and perhaps upgrading your bed to a hospital bed or a bed that moves up and down, it’s easier access that way.

Doctors and palliative care specialists are usually subsidised by the government. Some doctors bulk bill, but this may differ with home visits.

If you have a private health fund, they also may assist with the costs. Prescription medication may be covered on the PBS, which is the pharmaceuticals benefits scheme, and if you have healthcare card, these may be subsidised.

Your private health fund may pay for more specialised medications, however everyone’s going to have to check this. It’s not automatically included just with your private health.

If your spouse has to give up work, they could apply for a career pension or care allowance through Centrelink, and you’ll need to check your eligibility as the carer pension is tested, is means tested, so the carer allowance is not means tested. So if you are still working and don’t meet the means testing criteria for Centrelink you should also check your income protection insurance. If you pay this through your super.

Robyn: So, how’s the best way to support someone who is palliative?

Bindy: Look, compassion is the key, all the way. There are no magic words to take the diagnosis away or to help the person overcome their illness or come to terms with their illness.

Assurance that you’ll be there for them whenever they need and asking them how you can support them is really helpful. Remember what works as support today may not work tomorrow.

The grieving process starts from the moment the person’s diagnosed. You really need to listen and allow the person to express their feelings. Their journey may consist of anger, sadness, disbelief, loneliness and fear.

Some having a professional counsellor can offer a different perspective to support the person palliating and allow friends and family to provide the love and support. Carers often burn themselves out trying to care for someone who is palliative, so it’s important to recognise that it’s a very sad time and allow yourself to feel the grief that comes.

Carers often put their own health at risk trying to manage everything. Accept help from others and know you’re not alone. You need as much support as the person who is ill.

It’s hard to think about planning ahead when you’re trying to support someone, and it sounds a little bit cold, but you really need to be prepared and put supports and strategies in place for yourself. Make the most of the time you have left with your loved one, especially in their final days.

Robyn: Yeah, I think that’s a very important point. And should someone with a palliative diagnosis prepare their funeral?

Bindy: This is a really good question and the answer is yes, if possible. This takes all the pressure off your family in their time of sadness and grief, and it really helps to ease the emotional burden. It honours your wishes and allows you to make informed decisions. about the arrangements in advance.

You can write your own eulogy, you could even prerecord this if you’re up to it. Meet with a priest, minister or celebrant. You can choose flowers, the casket and perhaps even your final resting place. I mean, let’s face it, we don’t see this as a normal conversation to have about death and dying, it frightens so many of us. However, when we prepare for the arrival of a new baby, all the plans are put in place and talking about it is part of daily life. It’s really difficult to think of death the same way.

Robyn: So Bindy, in conclusion, where are resources available for those who are needing assistance?

Bindy: Yes. So there are some wonderful resources and supports available.

For those residing in Queensland, I would recommend starting with Palliative Care Queensland. And for those residing in New South Wales, I would recommend Palliative Care New South Wales. Both have great websites and compassionate staff available to assist you and they may be able to connect you with supports depending on where you are in your journey.

Robyn: Well, Bindy, thank you for discussing what is as we said, a very difficult and an emotional topic, but one that really does need the conversation. Thanks for joining us today.

Bindy: Thanks for having me.

Robyn: You’ve been listening to law talks here on 4CRB, which you can hear every Friday morning from 9 o’clock.