It’s a strange fact that the thing we are all certain to experience as human beings is often the one that we find hardest to talk about. Yet, far from being sad or painful, talking about dying can reduce our fear, it can bring us together and can even be a liberating experience.
Talking about dying makes us think about our lives, our loves, our relationships and what is truly important to us. Perhaps we shouldn’t leave discussions about how we die until we are ill?
As a Hospice nurse I was privileged to be part of many conversations about dying. Some people balanced planning their death and funeral with their next holiday or special time with family or friends. One woman I knew was so determined not the miss the party after her funeral that she held it the month before she died!
Having worked in hospice care for more than 30 years, I know that dying is sad and emotional but being informed and prepared can help. When pregnant with my first child, the practical preparations of classes, understanding the pain control available and where I could give birth all helped - as did making sure the freezer was full of ready meals. Preparing for death is similar. Understanding what might happen and what you and your family or friends would want are equally important. Professionals can suggest and advise but how and where you want to be cared for is up to you.
Being prepared and sharing your thoughts with family and friends can be a gift to them as they will know what you want. If you are suddenly taken ill, doctors will ask your family what they think you would want to happen. If you have had those conversations and perhaps even written them down it will help make sure you have the type of treatment you would want and perhaps in very extreme circumstances prevent life saving treatment when you actually would have preferred to be allowed to die peacefully.
Facing death is hard, for the dying and those who will be left behind, stories in the media are often about those whose dying is painful and undignified. We do not hear about the many thousands of people that have been supported by family, friends and professionals to have a peaceful and dignified death. Hospices have played their part in improving this, but I believe there is much more work to be done if we are to make everyone’s experience of dying better.
St Nicholas Hospice Care has helped people have many of these conversations, advice can be found on our website, www.stnicholashospicecare.org.uk, and and on www.dyingmatters.org
Thursday, July 12, 2012
Tuesday, June 19, 2012
Putting people at the heart of care
We hear a lot in the news about ‘health’ care and ‘social’ care. But the debates that take place are often made in response to political changes and legislation; I would suggest we are in danger of losing sight of what ‘care’ people really need when they are ill or dying.
Hospices, like many other charities, put the person and their family at the heart of the care they give. When a person has a life-threatening illness and is facing the end of their life, it is crucial they are treated as an individual, not a diagnosis.
National proposals seem to give a much higher priority to caring for people in relation to their illness and their medical needs and a much lower priority to someone’s everyday or ‘social’ needs.
Everyday needs include getting washed and dressed and eating and drinking, as well as other day to day challenges that can make someone feel they are losing their dignity or who they are as a person.
It is holding on to who you really are that is so crucial when you are dying; your relationship with your partner, your family, friends and even your pets. The things that one did so easily when well, like shopping, gardening, ironing or walking the dog suddenly seem insurmountable and a burden when you are ill and can be a painful reminder of the change an illness has brought about.
What national documents and guidelines so often ignore is that people still need to do the shopping and think about their daily lives in order to manage their death well. We should not define people by their illness. Instead we need to recognise that people have lives in their own communities that are still an important part of their needs (their pets, gardens, the lives and interests that inform their character).
Good social and practical care can make such a difference to a person and their family: Meeting their everyday needs can mean that they can manage the demands of an illness, reduce the burden on families who are caring and can event prevent unwanted hospital admissions.
We are fortunate at St Nicholas Hospice Care to have more than 100 volunteers who have come forward to help people with life-threatening illnesses. Hospice Neighbours service is volunteer-led and works alongside doctors and nurses helping people in their own community.
Hospice Neighbours help with everyday chores such as walking the dog, picking up prescriptions, returning library books, mowing the lawn or sharing a cup of tea. It is about neighbourliness, community and companionship. More than 150 people across West Suffolk and Thetford have benefitted from having a hospice neighbour since the scheme began just over a year ago.
Changes in government funding for social care will have huge implications for all of us as society gets older, the need for care continues to grow and more of us worry about how to pay for it. Whilst we must make sure that the government uses our money wisely and fairly for us all, Hospice Neighbours reminds us that that caring is not just about a financial transaction; it is about people in their communities giving wonderful acts of kindness to others.
Hospice Neighbours are an inspiration to us all and remind us that, whilst at a national level the care system seems intent on reducing people to a price tag, the true human value of caring for each other in times of need is indeed priceless.
My comments were published in East Anglian Daily Times Health Supplement on 14 June 2012
Hospices, like many other charities, put the person and their family at the heart of the care they give. When a person has a life-threatening illness and is facing the end of their life, it is crucial they are treated as an individual, not a diagnosis.
National proposals seem to give a much higher priority to caring for people in relation to their illness and their medical needs and a much lower priority to someone’s everyday or ‘social’ needs.
Everyday needs include getting washed and dressed and eating and drinking, as well as other day to day challenges that can make someone feel they are losing their dignity or who they are as a person.
It is holding on to who you really are that is so crucial when you are dying; your relationship with your partner, your family, friends and even your pets. The things that one did so easily when well, like shopping, gardening, ironing or walking the dog suddenly seem insurmountable and a burden when you are ill and can be a painful reminder of the change an illness has brought about.
What national documents and guidelines so often ignore is that people still need to do the shopping and think about their daily lives in order to manage their death well. We should not define people by their illness. Instead we need to recognise that people have lives in their own communities that are still an important part of their needs (their pets, gardens, the lives and interests that inform their character).
Good social and practical care can make such a difference to a person and their family: Meeting their everyday needs can mean that they can manage the demands of an illness, reduce the burden on families who are caring and can event prevent unwanted hospital admissions.
We are fortunate at St Nicholas Hospice Care to have more than 100 volunteers who have come forward to help people with life-threatening illnesses. Hospice Neighbours service is volunteer-led and works alongside doctors and nurses helping people in their own community.
Hospice Neighbours help with everyday chores such as walking the dog, picking up prescriptions, returning library books, mowing the lawn or sharing a cup of tea. It is about neighbourliness, community and companionship. More than 150 people across West Suffolk and Thetford have benefitted from having a hospice neighbour since the scheme began just over a year ago.
Changes in government funding for social care will have huge implications for all of us as society gets older, the need for care continues to grow and more of us worry about how to pay for it. Whilst we must make sure that the government uses our money wisely and fairly for us all, Hospice Neighbours reminds us that that caring is not just about a financial transaction; it is about people in their communities giving wonderful acts of kindness to others.
Hospice Neighbours are an inspiration to us all and remind us that, whilst at a national level the care system seems intent on reducing people to a price tag, the true human value of caring for each other in times of need is indeed priceless.
My comments were published in East Anglian Daily Times Health Supplement on 14 June 2012
Tuesday, October 18, 2011
Help the Hospices Conference - New commissioning environment
Thomas Hughes-Hallett's presentation described how many private companies are now working in end of life and palliative care and could be in direct competition with hospices, he challenged the audience to consider the following:
- Virgin Assura runs healthcare in Surrey
- Allied Health has now been taken over by Saga in end of life care in Oxford. SAGA will have 20,000 staff caring for chronically ill, dementia care and end of life care by Christmas 2011
- Primecare is working in Nene Valley delivering end of life and palliative care
- PCT allocation per dying person varies between £150 and £6,000
- Whether it is time for hospices to share back room resources e.g. training, IT etc.
- It may become legal right for people at end of life to have their needs assessed and their care coordinated
- Marie Curie is working in partnership with Cancer Research processing research applications
Some Hospices are responding to this changing climate and the need for more income by establishing social enterprises or community interest companies, some of which are delivering home care (like a care agency). One session heard from Martletts and Matt Knop about the setting up of such companies and the support available. Perhaps before diversifying, hospices first need to ensure that their current business of delivering services is running as efficiently as possible and that all income funding streams are as profitable as possible.
Tim Harford at the Help the Hospices 2011 Conference
Tim Harford's presentation followed Barbara Monroe's and carried on her themes of adaptation and working differently, that we need to value self criticism and move away from the "God complex" that we know best!
Tim's book Adapt suggests that one should try at something small, be prepared for failure, and whilst our instinctive reaction might be denial, we should learn from our mistakes. The stronger the feedback loops are in an organisation the better it can learn and develop. He goes on to describe some very successful organisations that devolve more power and responsibility to managers and people at the front line rather than keep the power at the top, encouraging people to try different things.
Apparently Google expects 80% of its products to fail (although as Tim said they don't make parachutes). A recent example of this is the news that Google is dropping products that have failed to take off). The key must be that it can afford to take these risks and has a back up plan. Perhaps hospices should be better at trying out more variations of care. Tim recommended Testing Treatments as a guide for research. However he reminded us that generally we averse to trying things out and getting it wrong because we don't like loss. I am sure this might apply even more when working in hospice care and increases the need for managers to be skilled in supporting their staff in trying out new ideas.
Tim's book Adapt suggests that one should try at something small, be prepared for failure, and whilst our instinctive reaction might be denial, we should learn from our mistakes. The stronger the feedback loops are in an organisation the better it can learn and develop. He goes on to describe some very successful organisations that devolve more power and responsibility to managers and people at the front line rather than keep the power at the top, encouraging people to try different things.
Apparently Google expects 80% of its products to fail (although as Tim said they don't make parachutes). A recent example of this is the news that Google is dropping products that have failed to take off). The key must be that it can afford to take these risks and has a back up plan. Perhaps hospices should be better at trying out more variations of care. Tim recommended Testing Treatments as a guide for research. However he reminded us that generally we averse to trying things out and getting it wrong because we don't like loss. I am sure this might apply even more when working in hospice care and increases the need for managers to be skilled in supporting their staff in trying out new ideas.
Help the Hospice Conference 2011 my reflections on key speakers
The Help the Hospice 2011 Widening Horizons Conference in Bournemouth, demonstrated a mix of innovation, best practice and how to operate in the changing NHS climate.
Andrew Lansley Secretary of State for Health set the scene, he spoke of his personal experiences of palliative care and hospice care and that it was about the quality of relationships. He highlighted:
Andrew Lansley Secretary of State for Health set the scene, he spoke of his personal experiences of palliative care and hospice care and that it was about the quality of relationships. He highlighted:
- New standards for EOLC would be released in the autumn
- Voices will be used as an indicator of how well we are doing with end of life care, Voices is a survey conducted with bereaved relatives (this means there will be no emphasis on surveys of patients receiving care)
- He was committed to cut red tape and support the patient statement "no decision about me without me"
- The need for more innovation and encouraged commissioners to listen to patients wishes as who should provide care
- The proposed tariff would be piloted in 25 areas to be completed by 2013 for implementation in 2015.
- That some hospices will be working with many different consortia
- The "Any Qualified Provider" scenario could result in a poor quality provider
- That Hospital support teams not part of the picture
- Joining together.
- Think about the family
- The cost of providing care
- Look at scale and replicability
- Focus less on data about current users and more about data from non users
- Change attitudes
- Create leaders of teams
- Have the courage to have conversations about a time to die
- Focus on the education of nurses - hospices are one of the few places that uses a traditional model of nursing
- Not over privilege the psychological above the social, social support can be a priority.
Friday, July 1, 2011
My reflections on the funding report
Whilst I welcome the general recommendations of the report to improve care to people at the end of their lives and the attempt to ensure a more equitable funding system as there is undoubted need for increased support for more people to help them have a dignified death in their place of choice.
I am concerned about the concept of a register. The report recommends that to receive fully funded care, people would have to be on an end of life register. To get on the register they would need to have an assessment by a healthcare professional and agree to be on the register. For some people this might be a relief mitigating the need to undergo a means test and possibly ensure swifter discharges from hospital. However would everyone want to be on a end of life register?
People already find talking about dying difficult and many professionals have had limited training or experience having those conversations. This raises many questions - would there be increased demand on hospice staff to be involved in those conversations? Could patients unwilling to have such conversations receive a lesser service? Would some providers only accept people if they were on the register? Would people ask to go on the register to get the free funding?
The proposed system is also very medically orientated and might put some people at a disadvantage if they wanted a more natural uncomplicated death - there are real similarities with birth which has also been taken over by the medical world.
The new system of funding for hospice also looks rather bureaucratic with hospices needing to collect activity data about patients and their level of need and function. Hospices already face the bureaucracy of ensuring they are compliant with the Care Quality Commission, Charity Commission, Companies House, Cancer Peer Review and the End of Life Care Measures.
Although the report clarifies what the NHS will fund and what they will not, many services still need to be funded by charitable donations.
I would be interested in hearing what other people think please post your comments.
I am concerned about the concept of a register. The report recommends that to receive fully funded care, people would have to be on an end of life register. To get on the register they would need to have an assessment by a healthcare professional and agree to be on the register. For some people this might be a relief mitigating the need to undergo a means test and possibly ensure swifter discharges from hospital. However would everyone want to be on a end of life register?
People already find talking about dying difficult and many professionals have had limited training or experience having those conversations. This raises many questions - would there be increased demand on hospice staff to be involved in those conversations? Could patients unwilling to have such conversations receive a lesser service? Would some providers only accept people if they were on the register? Would people ask to go on the register to get the free funding?
The proposed system is also very medically orientated and might put some people at a disadvantage if they wanted a more natural uncomplicated death - there are real similarities with birth which has also been taken over by the medical world.
The new system of funding for hospice also looks rather bureaucratic with hospices needing to collect activity data about patients and their level of need and function. Hospices already face the bureaucracy of ensuring they are compliant with the Care Quality Commission, Charity Commission, Companies House, Cancer Peer Review and the End of Life Care Measures.
Although the report clarifies what the NHS will fund and what they will not, many services still need to be funded by charitable donations.
I would be interested in hearing what other people think please post your comments.
Palliative Care Funding Review Summary
I have had a quick look at the report published at 9am this morning and have pulled out these key points.
The report published this morning reports that 470,000 people currently die each year, however it states that not all of these people will need palliative care.
The review estimates that the total palliative care needs of the population in England is around 355,000 people (with a maximum of 457,000) requiring care every year. The numbers who currently receive specialist palliative care is around 171,000. They estimate that around 92,000 people per year have unmet palliative needs, but this could be as many as 299,000.
The report recommends that the NHS should fully fund:
Key classification criteria proposed:
Adults
The report published this morning reports that 470,000 people currently die each year, however it states that not all of these people will need palliative care.
The review estimates that the total palliative care needs of the population in England is around 355,000 people (with a maximum of 457,000) requiring care every year. The numbers who currently receive specialist palliative care is around 171,000. They estimate that around 92,000 people per year have unmet palliative needs, but this could be as many as 299,000.
The report recommends that the NHS should fully fund:
- A regular assessment of the needs of a patient
- All the clinically assessed palliative care needs of a patient irrespective of setting, as in any other branch of clinical care
- A coordinator for the patient who will guide them through their journey, signposting patients and families to the full range of services including those provided by society and not funded by the state
- At the end of life, as an addition to the tariff, the social care needs of a patient after they are added to an end of life locality register (removing the need for social care means assessment for patients on an end of life locality register)
- Palliative care education and training for NHS professionals.
- Episodes of care which are not assessed as a clinical need
- Support for families and carers
- Bereavement care (except for a prebereavement assessment), spiritual care, complementary therapies, support for carers and families, information and advice, respite care for adults, play therapy, and other similar interventions.
Current funding:
A survey by the Department of Health estimated that PCTs spent £460m on adult palliative and end of life care in 2010/11, with one PCT spending £0.2m on specialist palliative care alone, and another £21m. This means that one PCT spent approximately £186 per death on specialist palliative care, while another spent £6,213. A total of, 61% of all PCTs spend less than £1,000 per death in their PCT. However the majority of funding comes from voluntary donations through fundraising. By increasing the provision of services outside the hospital could lead to a potential reduction in hospital costs of £180m per annum.
Costs will be relative to a 4 stage classification system, based on the system in Australia
- Stable
- Deteriorating
- Unstable
- Dying
This system could then be further combined with a system to capture the other drivers (provider type, problem severity, functional status and age), the system would need to be split between adults and children.
Key classification criteria proposed:
Adults
- Phase of illness
- Provider type
- Problem severity
- Functional status
- Age
Children
- Age
- Phase of illness
- Problem severity
Providers will be paid on an activity basis, the level of payment will be based on the complexity and resources needed. with episode payments for each phase of illness.
The review recommends that once a patient reaches the end of life stage, and are put on the end of life locality register, all health and social care should be funded by the state and free at the point of delivery; but the social care additional tariff would not not include accommodation costs. The report acknowledges further work on this is undertaken and pilots established to test the model.
Recommendations:
- Commissioning levels for palliative care services per population for adults and children should be set at a minimum population level of 300,000, and up to £1.5m
- Implementation of a per-patient funding model based on the presented classification system
- The development of a statement by the Government describing the palliative care support and services that patients, families and carers can receive, if they need them, from the NHS.
- A lead provider for palliative care is identified in every Clinical Commissioning Group, to coordinate all palliative care services, including those not funded by the NHS.
- Every Clinical Commissioning Group (or at commissioning network level) should be required to hold an end of life locality register
- Focus on 24/7 community care
- Drugs and pharmacy services still fully funded by NHS
- A leadership board be put in place, with representatives from across both the adult and children’s palliative care sector working in partnership with Government to manage and drive forward the transition to the new system.
- A new national data set will need to be developed, with nationally agreed methods to report, collate and analyse palliative care provision.
Ensuring availability of palliative care in hospital and community settings, and supporting early referral to palliative care, could therefore potentially lead to significant cost savings for the NHS on hospital costs in the last year of life.
Next steps:
- The current minimum data set is expanded to support the tariff and its collation made mandatory for all organisations providing NHS dedicated palliative care services.
- Outcomes measures are developed which are supported by the dataset and the NHS outcomes framework.
- Transition phase to the new system supported by national funding
Timeline
From April 2012 build up community services
April 2012 - March 2014 - Undertake two-year pilots and collection of reliable and consistent data
April 2014 - March 2016 Shadowing of currencies and tariffs
April 2016 full implementation
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