- Assisted Dying Bill
- Assisted Dying Bill Published
- Winners of the Derek Doyle Poster Prize
- Palliative Care Poster Parade
- SPPC Submission to Scottish COVID-19 Inquiry
SPPC Blog
Living and dying with the 'unknown unknowns'
“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.
Shopping and mopping? Think again.
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.No-one dies alone
Alison Bunce talks about Compassionate Inverclyde, a programme aiming to enable and empower individuals and communities to help and support each other at times of increased health need, at end of life and in bereavement.
What is a compassionate community?
Prof Allan Kellehear and colleagues provide a helpful answer to that question in the “Compassionate City Charter” (2016):
“A community that publicly encourages, facilitates, supports and celebrates care for one another during life’s most testing moments and experiences…. and that recognises that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility”.
In Inverclyde, we’re using shorter words, but that it basically what we’re trying to create. We’re working to build a “compassionate community” based on three things... compassion, help and neighbourliness.
Compassion is about people undertaking acts of kindness. Help is about both providing help, and enabling people who are in need to say ‘yes’. And neighbourliness is about ordinary people helping ordinary people.
Launched in March, the Compassionate Inverclyde Programme aims to enable and empower individuals and communities to help and support each other at times of increased health need, at end of life and in bereavement, recognising the importance of families, friends and communities working alongside formal services.
One way we’re planning to do this is through the No-one Dies Alone (NODA) programme...
NODA is an all-volunteer, grassroots program which provides support to those in their last hours of life who do not have family or friends available to be with them at this time.
NODA originated in the USA, when an American nurse Sandra Clarke failed to be with a patient who had asked her to be with him when he died. Sandra got caught up with other duties and when she returned to the patient’s room he had died. This troubled her for many years and she went onto develop the NODA programme.
I’m pleased to be involved in the first Scottish pilot of the NODA programme, at Inverclyde Royal Hospital. It will become one of over 200 hospitals across the world running the programme, joining over 200 hospitals in the USA, Singapore and Canada.
Through this and other initiatives, were hoping that the Compassionate Inverclyde will have a transformative effect on the community of Inverclyde, developing social capital, building community capacity and resilience and positively influencing the lives of individual community members.
Alison Bunce, Compassionate Inverclyde Programme Lead
how aware are we of the impact of caring for older people?
Katharine Ross discusses the enormous contribution made by front line support workers employed in care homes and care at home organisations to the delivery of palliative and end of life care for older people.
“you know, i’ve never actually really believed that death is inevitable.
i just think it’s a rumour.”
This quote from David Carridine – actor and martial artist - makes me smile. When asked about his attitude towards death, Carradine responded tongue in cheek and proffered the case that death is “just a rumour”.
If only! We know dying will come to us all, and most people reading this will have experienced the death of a loved one, or somebody significant in their life. The loss, the sadness, the devastating grief - all so very real and often so utterly overwhelming.
Death is happening everywhere; it’s most definitely not a rumour. In Scotland around 54,000 people die each year and over 200,000 people are significantly affected by the death of a loved one. In general, we are dying at older ages - sometimes accompanied by frailty, dementia and multiple medical conditions. The number of people dying each year is rising, driven by population growth. By 2037 the number of people dying each year will have gone up by 12% to 61,600. It is thought that up to 8 out of 10 people who die have needs that could be met through the provision of palliative care.
With this knowledge Scottish Care decided to undertake a significant piece of research at the end of 2016 which sought to explore and describe the experiences of front line support workers employed in care homes and care at home organisations who were involved in the delivery of palliative and end of life care for older people.
At four locations across the country my Scottish Care colleagues and I were privileged - and often moved to tears - listening to examples of compassionate end of life care. We heard extraordinary stories of physical, practical, social, emotional and spiritual support being given to older people - all of which was being delivered by dedicated, committed front line support workers who provide the largest proportion of palliative and end of life care in Scotland.
We captured extraordinary stories such as the care home staff team who formed a guard of honour as a resident left their home for the last time.
We listened while front line social care workers – all too often underpaid and undervalued - shared their experiences of caring for older people at the end of their lives, often with little or no specialised training. One participant said quietly:
“I want to be able to explain to somebody exactly what’s going to happen (when they die). I want to be able to stop someone being afraid”
We also heard the challenges involved in having open conversations about dying. As another support worker said:
“I don’t know what to say….it can be overwhelming. We try and say what we think is right. It just comes out.
…You feel like you’re apologising all the time”
I suppose what we really captured was the human impact of delivering care at the end of someone’s life, and of doing this in challenging conditions on a regular basis - for multiple people.
Indeed, a focus group participant was the inspiration for the title of our publication. “We are the trees that bend in the wind” is how this person described a workforce which adapts, changes and flexes to the journey of palliative and end of life care, and experiences it with the supported person.
But this phrase also relates to a workforce under sometimes intolerable pressure and strain, at risk of breaking, or at least of losing part of oneself in the process of providing end of life care. Delivering palliative and end of life care to older people requires highly skilled, technical and practical interventions. It also involves providing emotional support, a familiar face, a hand to hold, family liaison and so many more forms of care and support that cannot be captured in any job title, not least ‘a support worker’.
In our report, Scottish Care have made 12 recommendations. Some relate to the individual who is dying – for example the development of work which embeds a human rights-based approach to the exercising of choice and control at the end of life, especially relating to the rights of older people. Dying of frailty or dementia, for example, should have a specific pathway in the same manner as those which have been successfully developed for cancer and other conditions. Scottish Care believes the very real issues of ageism and resultant chronic underfunding of Scotland’s older people who need care and support must be addressed as part of this.
Other recommendations relate to the workforce, and to the policy conditions which ultimately dictate practice.
There has to be a greater emphasis on honest & open conversations about how we pay for and commission palliative and end of life care – especially for older adults. Can we honestly say that we adequately resource the social care sector to train its staff to an appropriate palliative level? Do we ensure sufficient time is given for a care at home support worker, to listen, to have open conversations, hold somebody’s hand, to comfort, provide love, to wipe a tear of fear away?
The answer is no.
Death is not a rumour; it’s very real and we need open, honest and progressive conversations about the delivery and funding of palliative and end of life care in Scotland as a matter of priority. Scottish Care welcomes the opportunity to work with The Scottish Partnership for Palliative Care – and others – to ensure this happens.
Katharine Ross - National Workforce Development Lead - Scottish Care. The Scottish Care report Trees that bend in the wind can be accessed here:
Trees that Bend in the Wind: Exploring the Experiences of Front Line Support Workers Delivering Palliative and End of Life Care
Grasping the Nettle
Mark Hazelwood reveals some of the thinking behind the SPPC's recently published report 'Grasping the nettle'.
Grasping the nettle aims to provide a clear consensus view on the way ahead for palliative and end of life care in Scotland.
In both polar exploring and public policy it is periodically a good thing to stop, take stock and consider carefully the direction of travel.
It is eight years since SPPC published its last sector-wide analysis of how to improve palliative and end of life care in Scotland [1].
Since then we've seen the first Scottish government action plan on palliative and end of life care, Living and Dying Well, the crisis in public finances as a result of an under-regulated banking sector, the demise of the Liverpool Care Pathway, the Francis Inquiry, and many very positive practical improvements in palliative and end of life care at the local level.
When the Scottish government made its welcome announcement in 2014 that it would produce a new strategic framework for action for palliative and end of life care, SPPC committed to supporting and informing the development of that strategy.
As the representative body for palliative care – with over 50 member organisations – we wanted to ensure that the experience and expertise of the people and organisations in our networks were brought to bear on the complex and large challenges needing to be thought through.
Policy and strategy are never sufficient on their own to achieve change, but they can be helpful. Conversely, a recent survey identified 'confusing strategies' as the number one barrier to change [2].
Grasping the nettle aims to provide a clear consensus view on the way ahead for palliative and end of life care in Scotland. Its purpose was to support inform and enrich development of the Scottish government’s strategic framework.
To that end, the structure of Grasping the nettle is based on the 3-step improvement framework for Scotland’s public services [3], so that palliative and end of life care issues are framed in terms which resonate with the Scottish government's wider public service reform agenda.
The vision articulated in Grasping the nettle is that Scotland will be a place where:
- people’s wellbeing is supported even as their health declines
- people die well
- people are supported throughout bereavement.
In this vision – and throughout the report – we have tried very hard to achieve clarity of terminology and to shine a light on important differences of meaning which sometimes lurk behind stock phrases, creating a false impression of mutual understanding.
In producing the report, SPPC undertook many of the usual tasks of strategic thinking – an analysis of the world in which we are working, an assessment of where palliative and end of life care is at, an assessment of the main challenges and the things which need to change.
Engagement from our 50+ member organisations and other stakeholders has been excellent during a three-stage iterative process from May to November, which was overseen by a multi-disciplinary sub-group of SPPC’s council. Drafts were shared with the Scottish government at each stage, who welcomed the report as a very helpful input to their process of developing the strategic framework for action.
Perhaps the most difficult stage of thinking was to move beyond broad outcomes and to propose a set of specific actions which would achieve significant positive change.
The report identifies 38 actions – a busy agenda, but then this is a big issue and the scale of change required is huge.
The report’s proposals include – but also go beyond – specific issues such as education and advance care planning. In addition, we address leadership and the role of government and others in creating the conditions which support and enable change.
Taken together we believe the proposed actions create the necessary conditions for change, describe specific changes required and specify a broad framework of accountability.
This blog is by Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care.
References
- Scottish Partnership for Palliative Care. Palliative and end of life care in Scotland: the case for a cohesive approach. Scottish Partnership for Palliative Care; May 2007. Available from:http://www.palliativecarescotland.org.uk/content/publications/?cat=14
- Health Services Journal. The crowd speaks: Top 10 barriers to change. HSJ; 10 February 2015. Available at: http://www.hsj.co.uk/topics/technology-and-innovation/change-challenge/the-crowd-speaks-top-10-barriers-to-change/5081962.fullarticle
- The Scottish Government. The 3-step improvement framework for Scotland’s public services. The Scottish Government; 2013. Available at http://www.gov.scot/Resource/0042/00426552.pdf
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