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Living and dying with the “unknown unknowns”

In this special blog to mark Death Awareness Week Scotland, Tanith Muller discusses reasons why a change of culture is needed to support people living with progressive conditions to live well and prepare for declining health.

“There are known knowns. These are things we know that we know. There are known unknowns. That is to say, there are things that we know we don't know. But there are also unknown unknowns. There are things we don't know we don't know.”
- Donald Rumsfeld

Life with a condition like Parkinson’s is characterised by uncertainty.

Getting a diagnosis (the known known) typically takes some time, and even then doctors can’t reliably predict what the future will hold for any individual (a scary combination of known unknowns and unknown unknowns). And as the confusing Rumsfeld quote demonstrates, people find themselves in a bewildering and uncertain world where nothing can be taken for granted.

More than 60 Parkinson’s symptoms are possible - but they are not inevitable, and they affect each person in a unique combination of ways. Rates of progression vary considerably. With the right treatment and support, some people live with the condition relatively well for some years. Others face significant impairments within the first five years.

Many people develop dementia, communication and mental health symptoms that can affect their ability to make their wishes known as their condition progresses.

Around 900 people in Scotland die each year with Parkinson’s recorded on their death certificates, but there is evidence that this is significantly under-recorded. The most recent UK Parkinson’s Audit in 2015 showed that only 28% of people with advanced Parkinson's had any recorded discussion of end of life care issues. Very few people with Parkinson’s access specialist palliative care, despite evidence that people at the end of life report quality of life as bad - or worse than - people with advanced cancer and motor neurone disease.

More than 11,000 people in Scotland are trying to balance hoping for the best while preparing for the worst. But facing the inevitability of declining health can be really tough.

Take Janice, diagnosed eight years ago. She says she is “pretending to be ok”.

“I live for the day, and I don’t think about the future a lot. It flits through my mind and then out again. I’ve tried to make life so normal for my two children. I don’t want my kids to have a sick mum, I want them to live their young lives and not be worried.”

Janice was still working as a palliative care nurse when she was diagnosed – and by coincidence, her first client after her diagnosis was a man dying with advanced Parkinson’s. She found the experience unexpectedly reassuring, “He was an older man – much older than me, and his death really wasn’t that different from those I’d seen with end-stage cancer. I realise that dying didn’t frighten me. I thought I feel OK, I can cope.”

That’s not to say that she is without fear. But what Janice fears is dependency, not death. “I can’t stand the thought of being dependent. I’m the person who does. I value my independence and my ability to help other people.”

And the fear of future impairments is common. One man, diagnosed with Parkinson’s in his mid-thirties, gets his wife to vet Parkinson’s publications for him, so that he does not have to read anything depressing. Some people – including those with advanced illness - prefer to avoid meeting others with Parkinson’s in case they represent their potential future. Gerry has lived with Parkinson’s for twenty years, and says he and his wife use humour to deflect their fears, with jokes about care homes to the fore.

One man told me about his late wife. She lived well with her Parkinson’s for eighteen years, before it advanced to a point that made her last four years very difficult.

By all accounts, she received excellent care and support. But the transition to being cared for was an impossible one for her, and she hated the experience. She liked her carers, but found losing her independence degrading. She said that using a hoist made her feel “’like a piece of meat”.

Her widower says that with 2020 hindsight, he wishes that the family had got more support earlier, like a wet room, a stair lift and a wheelchair accessible car. But he admits that his wife was resistant to adopting what she saw as the markers of increasing dependency.

It can be challenging for health professionals, families and friends to support people affected by Parkinson’s to think about and plan for the future. We’re up against a culture that fears disability, frailty, old age and death, and a condition that is characterised by uncertainty. It would perhaps be less intimidating if advance planning were seen as something for everyone to consider, not just those who are facing a future of increasing ill health.

But the issues people with Parkinson’s face are pressing. Creating a culture that supports people to think about the future can - and must – be done.

Parkinson’s UK has developed a range of accredited information materials about advanced Parkinson’s to support individuals and families to prepare for declining health and the end of life. Our free local adviser service and helpline offer confidential one-to-one support to people affected.

The health professional-led UK Parkinson’s Excellence Network is looking at ways to increase the uptake of anticipatory care planning for people with Parkinson’s, and spread this across services in Scotland and the rest of the UK.

The reasons why we must deliver a change in culture ultimately lie with people living with Parkinson’s. The good news is that Janice is already thinking about her future, with a will pending once complex pension issues are resolved. Gerry has already planned his funeral, and is considering how power of attorney could deliver greater peace of mind for him and his wife. And as one carer, whose wife has had Parkinson’s for more than 20 years said to me:

“This is a subject which nobody likes to talk about, but I think it has to be brought out into the open, so that all families affected by Parkinson’s are able to make the right decisions if they need to. My wife and I are glad we’ve had the opportunity to discuss these issues, because we now have a clearer understanding of each other’s thoughts and feelings. We think it’s really helpful to have a prompt for such conversations while the person with Parkinson’s is relatively well. It’s certainly been positive for us.”

Tanith Muller is the Parliamentary and Campaigns Manager for Parkinson’s UK in Scotland.

If you are affected by any of these issues, please visit parkinsons.org.uk to access resources and free confidential support. access resources and free confidential support.

Realistic choices - what matters to you?

In this special blog to mark Death Awareness Week Scotland, Juliet Spiller discusses 'Realistic Medicine', advance care planning, and the how to achieve a real shared understanding of the risk / benefit balance that lies in every treatment and care decision.

Why is it that, so often, it takes the reality of dying to focus the mind on living well? It’s as if the only true justification for taking time to focus on “what matters to me” is hearing that you are running out of time whether that is at the age of 22 or 92.

Palliative care is about controlling symptoms, of course, but it is also, and has always been, about supporting patients and their families to identify and focus on what matters to them and what can bring value for them.

An individual’s core values are what underpin their goals of care, and clarifying goals of care enables an open conversation about realistic choices for treatment and care to start to make sense.

The problem is that most people need support, or at the very least prompting, to consider what their core values are for the first time. If you are not used to thinking about what really matters you may find it hard and unfamiliar.

This way of thinking is even harder to do when faced with a diagnosis of terminal illness and a big blanket of grief and loss and suffering is covering your head.

Time and again I watch patients and families wrestle with the impossible pressure of “making the most of the precious time” when all that fills their thoughts and their view is the loss of the healthy happy future they had planned and worked for.

Learning to notice and get real enjoyment from “the moment” is a skill we all have as children but most lose in adulthood and it takes effort and practice to keep it or to get it back. When you have limited time and limited function it is a skill that can make all the difference in so many ways.

Imagine if we had a healthcare system that supported people to think about their treatment options in terms of what fits with their core values at every stage of wellness and illness. By the time a diagnosis of terminal illness came along we would be confident in what truly matters to us and expert in assessing the benefit / burden balance of an ever-changing range of realistic treatment options.

Our Chief Medical Officer for Scotland's annual report last year presented an invitation for all health and social care professionals to make this shift in the way they support patients and carers. Realistic medicine is an approach and an attitude where shared decision-making happens through respect for the individual’s values, and a focus on what matters which is truly person-centred.

This year’s CMO report provides impetus and strategy for making this vision a core part of everyday healthcare. For Palliative Care specialists it represents the “mainstreaming” of all the core aims and values of what palliative care has at its heart – a recognition that this is every care professional’s job.

Done well this approach enables the benefit / burden balance of realistic treatment choices to be truly shared and understood, and explanations about which treatments will not provide any benefit can make sense for patients and for families.

But the real experts in how to do this are the patients and their carers, and as clinicians and care professionals we have a lot to learn about how we really support individuals with shared decision-making about their treatment and care options.

Awareness of the critical importance of Health Literacy is gradually increasing but if the media interest in the Liverpool Care Pathway and on DNACPR decisions has taught us anything, it is that health professionals needs to focus much more energy on learning from the real experts (patients) about how to explain uncertainty, and how to achieve a real shared understanding of the risk / benefit balance that lies in every treatment and care decision.

No one would suggest we should all be thinking about death and planning for dying all the time – most folk just want to get on with living. But if you ignore or deny what might be ahead you may find that nagging worries about what the future holds creep into your field of vision every now and again and get in the way of enjoying the moment.

Starting an Anticipatory Care Plan (ACP) means that those worries, which take so much effort to constantly push back into the dark corners, can transform into thoughts and conversations and decisions which can be documented. These decisions will in turn be sources of reassurance that your wishes are known and will be respected even if you are too unwell to think about what you want at the time.

It will soon be expected that any health or social care professional might ask you questions like;

“Are you able to think about a time when you might be less well – what do you feel would matter most to you then?” “Who would you want to make decisions on your behalf if you weren’t able to do that?”

Discussing how any treatment options might fit with, or might risk the values a patient recognises as what matters most to them is not optional and it is not a luxury of time. It is of supreme importance for good end of life care but it is also just good care for any patient and their family, at any time. Expect to be asked “What matters to you” and if you are not asked…..please have a think about it and just tell us anyway!

Dr Juliet Spiller, Consultant in Palliative Medicine at the Marie Curie Hospice, Edinburgh.

Shopping and Mopping? Think again.

In this special blog to mark Death Awareness Week Scotland, Jane Perry discusses palliative and end of life care from her perspective as Operations Director for Bluebird Care, a provider of private care at home.

The work done by care at home support workers is definitely not the “shopping and mopping” service so cruelly described by many. Bluebird Care staff have to deal with all kinds of situations. From getting up in the cold dark mornings facing the rush hour traffic, to supporting someone to die how they choose in their own home – Bluebird Care staff are big hearted, passionate caring professionals who deserve to be recognised for the hard work they do in the community.

I’m very proud of our teams and every single one of them knows this. If as an employer I don’t look after our front line workforce, who will look after our customers?

With this in mind, at the Bluebird Care Offices in Edinburgh we have a “Zen Room” that any of our staff can pop in to use – whether on a break, having their lunch, or working on a SVQ qualification. If one of our customers has died, we use this room for support and comfort as part of the grieving process. It’s a very tranquil space, usually with a scented candle, water feature, soft furnishings and forest mural on the wall.

We are providing more and more end of life and palliative care and I want to make sure all our staff is equipped to deal with this. We provide training in this area to all staff who are interested. We now provide staff with training in “Innovation in Death; The Last Taboo” and I’ve found this has really helped staff to have confidence and expertise in supporting our customers towards the end of life.

We also want to find appropriate ways of opening up the conversation about death with our customers - we want to make this previously taboo subject something openly discussed and planned for. We come into this world with a birth plan, so why not have a death plan too?! We are hosting a Death Café on 10th May in our Edinburgh office as part of Death Awareness Week and can’t wait to get tongues wagging.

Bluebird Care have been trading in Edinburgh for 9 years and in Glasgow for nearly 4 years. Being a quality care at home provider involves a lot of thinking on your feet, improvisation and tenacity, and I have dealt with all kinds of situations over the years. It’s been a real rollercoaster from trying to find private care at home for my terminally ill grandmother to being recognised as a finalist in the forthcoming Scottish Care Provider of the Year Awards has been quite a journey. I’ve laughed, I’ve cried and I have hopefully helped hundreds of people remain independent at home for as long as possible.

As Operations Director for both businesses, I feel very responsible for spinning all the plates to make sure everyone receives the first class care we promise them. I also want to ensure that our staff have the opportunity to have a career in care should they wish. I look forward to the future and to working with like-minded individuals and organisations in raising the profile of our sector.

Jane Perry, Operations Director, Bluebird Care Edinburgh and Bluebird Care Glasgow.
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