Skip to content
Skip to navigation
Email this page Print this page

SPPC Blog

realistic choices - what matters to you?

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.

Respite care and transitions: a complex problem

On Wednesday 8th October, MSPs in the Scottish Parliament will debate the 'Absence of Suitable Hospice and Respite Facilities for Young Disabled Adults'.

Inadequate access to respite care is just one dimension of the many difficulties experienced by young people with life limiting conditions as they move (transition) from children’s to adult services.

Children’s hospice services, including those provided by CHAS, offer the provision of holistic symptom management, emergency admissions, home care and short planned breaks. The purpose of a stay may also be the provision of a break for the child or young person and their parents, as well as end of life care and subsequently bereavement support for all of the family of the child or young person.

Scotland’s adult hospices are based on a very different model (in which the primary purpose of a stay will generally be to assess and deal with complex symptoms requiring a specialist intervention. Once these are resolved patients are generally discharged back into the community). Children’s and adults hospices share many similarities and are based on a common philosophy however they are not equivalent institutions.

The need for age appropriate respite care also extends to adults who experience the onset and progression of disease at a young adult age, for example the many individuals with multiple sclerosis.

The issue of transition was highlighted as an unmet need in the Scottish Government’s Living and Dying Well action plan in 2008. Living and Dying Well: Reflecting on Progress (SG March 2012) reported, regarding transition services, that “In many Boards this appeared to (be) a work in progress... A recurrent comment was the lack of equivalent adult services to transition to.” The Scottish Transitions Forum has developed principles for transition which provide a valuable framework.

The absence of suitable facilities is only one aspect of the situation; there are also barriers to accessing suitable facilities due to local authority funding policies, particularly since respite care for young people with high levels of need is relatively expensive (compared for example to typical costs for older people).

Leuchie House, is a voluntary sector provider of respite care for people with a range of long term conditions some of whom have high levels of need (for example advanced MS). Charging policies of local authorities may be a barrier to some young people accessing this service, despite the fact that the fees at Leuchie House are significantly subsidised by charitable fundraising and other grants.

A number of factors relating to Scotland’s health and social care system combine to make this a complex problem to address (beyond the significant challenges of resources). Identifying these factors may help to provide pointers to solutions:

1. The relatively small numbers of people affected in each local authority area may make dedicated local facilities difficult to finance and sustain. Any national solution is likely to require complex partnership across multiple NHS Boards and Local Authorities and there will be a need for a “lead broker”, with the resources to carry out complex and potentially protracted work.

2. As has frequently been articulated, whilst the financial costs of respite care fall on Local Authorities (and also on individual members of the public and voluntary organisations), the financial benefits tend to accrue to the NHS (in so far as respite care supports the health of the carer and prevents crisis admissions to hospital). It is to be hoped that ongoing moves to health and social care integration will address this issue of resource allocation.

3. The range and complexity of needs of young adults living with severe disability and/or life limiting disease makes a “one size fits all” solution inappropriate, and there is probably a need to develop a range of person centred options. Assessing the demand for services is therefore complex. There may be differences in preference as well as need (for example between getting respite at a dedicated centre vs. being supported to access a mainstream holiday facility, though this latter may not be feasible where support needs are high).

4. Whilst (at least until Self Directed Support becomes more widespread) responsibility for commissioning respite services lies with local authorities, some of these young adults may need quite high levels of clinical care as part of their respite.

5. There may be voluntary sector organisations who could be potential providers of new services, however the conditions for financial viability and sustainability need to be created for them to enter the market. A similar point could be made in terms of the independent sector.

These essentially practical complexities need to be overcome if the needs of growing numbers of young adults with life limiting conditions are to be met.

This blog is by Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care. Mark is also on the Board of Trustees for Leuchie House.

Caring for the Carers

More musings from Derek Doyle - the SPPC’s ‘old man’...

I recall a man being admitted from home, settling in well and being effusive in his praise of the care he was receiving and the kindness of the nurses yet clearly he would much rather have stayed at home. Why had he asked to be admitted, I asked him. “For my wife’s sake – she was looking so weary and worried. It was the last and the best thing I could do for her!”

We all know of the many studies which have shown that most people would prefer to be cared for and die at home rather than in a hospital or even a palliative care unit. All who have worked in the community – GPs, community nurses, visiting palliative care and social workers – know something of what it means to be a carer. They experience extreme tiredness, loneliness in spite of the number of others involved, constant worry about whether they are doing the right thing or could do more and, slow as most are to admit it, resentment that they are seldom thanked but rather taken for granted especially by family members. They may have their own health problems, often age-related, to cope with and all the uncertainty and anxiety that goes with ageing.

I have to admit that only recently have I become so aware and “ knowledgeable” about carers, because our church, like many others, is starting a Carers Support Group. I had never realised how many charities there are giving free advice on aids and equipment, grants and benefits, holidays for carers, communication aids, demonstrating lifting and moving, guidance on home modifications and, in the case of our church, time spent listening as carers unburden their feelings and fears. Will it enable more patients to remain at home knowing that their family carers are themselves being cared for? Are we palliative care professionals in Scotland knowledgeable enough about what charities focusing on carers can offer to help our patients achieve their wish to stay at home that bit longer. I certainly was not aware of them. They are all only a mouse click away.

Yes – you have all spotted a problem, but let us see it as a challenge. Who will look after the patient whilst the carer is out of the house for two hours or so? Surely not insurmountable!

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

 

More in your region
Loading ...