Change for the Better: Using the Mental Capacity Act to Improve End of Life Care in Care Homes

18th September 2007, London

On 18th September NCPC held its first of two conferences exploring issues within the Mental Capacity Act, particularly relevant to Care Homes. The conference aimed to identify practical ways in which the MCA can be used to deliver better care for residents, and also to set it within the context of the government’s new end of life care strategy.

Eve Richardson, Chief Executive of NCPC introduced the morning with her talk on “The Importance of Good End of Life Care in Care Homes”. Talking of End of Life Care Plans, she asked the delegates how many of them had planned for their own end of life care. Fifty per cent of the delegates raised their hands, leading her to explain that only thirty per cent of the public, in a recent Morrey pole, have planned their end of life. Quoting the same pole, she said that though most of the public would prefer to die at home (as supposed to the hospital) less than twenty per cent actually do, whilst acute hospitals account for nearly sixty per cent. Dying is an unequal experience, influenced by age, by diagnosis, by gender and by age and this, she said, can be mitigated by use of the hospice model of end of life care. Eve then explained NCPC’s work towards a greater equality of death, listing useful questions to help service providers:

-        How many residents die each year in your care?
-        Do you undertake holistic assessments?
-        Do all your residents have up-to-date care plans including end of life care?
-        Can you and your staff identify the patients who are nearing the end of their lives?
-        Do you and your staff talk with your residents about where they would like to live and die?
-        What links do you have with other health and social care providers?

Simon Chapman, Ethics Advisor for NCPC, then took the delegates on an introductory tour of the Metal Capacity Act (MCA). He described a new culture of care, heralded by the Act, where lack of capacity is a last resort; new methods of communication have been sought and there is now a legal obligation to act in the best interests of the patients. He gave examples of those for whom capacity can be an issue, for example those with dementia or learning difficulties. The objectives of the MCA are to:

• support adults with impaired capacity so that they can make decisions for themselves wherever possible
• to provide a protective framework for decision making, where they can not make decisions for themselves
• to provide a framework for those who have to take and implement decisions.

The rest of his talk concerned the practicalities of providing care within the new context of this Act (for more information, please click here).

Eighty-four year old Dorothy Runicles then offered a care-user’s perspective. She talked of the “resounding silence about death and dying – people will talk about a good life, but no one mentions a good death”. She welcomed the Mental Capacity Act as a “fantastic breakthrough” describing the last four years of her collection of evidence of poor practice in care homes as completely unheeded, an inherent ageism in the sector being more rife than racism or sexism. Her brother’s death was a “brilliant, lovely combined effort” of social workers and care practitioners, whilst her mother’s death was an agony for both herself and her mother, with the nurses unable to provide the necessary morphine patches themselves. When Dorothy was pregnant, no one talked about a good birth; the culture of pregnancy has now changed. She hopes the same can be achieved for a good death.

Tom Owen, Deputy Director for My Home Life Programme, then discussed quality of life in care homes. He described the purpose of Help the Aged’s programme, to promote quality of life for those living, dying, visiting and working in care homes for older people. The programme aims are:

• to develop a learning culture within the care home sector which draws on partnerships
• to foster evidence-based relationship–centered care that promotes dignity, respect and citizenship and
• to promote a positive identity of the care home sector with relevant stakeholder groups.

Alison Blight, NCPC’s Dementia Project Leader, then told delegates of NCPC’s recent findings in this field. She described the increase of older people, from 683,597 in 2006 to a predicted 1,700, 000 in 2050. The incidence of dementia also increases with age. She described the objectives of the new Dementia project, to map current services, to highlight gaps, to further understand user and carer needs and to develop a practical guidance. Emerging themes from the project seem to be that dementia is characterised by its fragmented palliative care services with variable access. Another significant feature of dementia is that it emerges in patients with multiple conditions.

Claire Henry, National Programme Director for the NHS End of Life Care Programme spoke about the importance of Advance Care Planning (ACP), and how it can help. The challenges she listed included the definition of ACP, when it can best be introduced to a patient’s care, fear of talking about the impending issues, and thus causing unnecessary distress. She defined ACP as a process of discussion between an individual and their care providers (regardless of discipline) which should be documented, regularly reviewed and communicated to key care providers. The process should be voluntary, confidential and directed by the individual concerned, with care providers having a duty to make clear all available options. Clare finished b advising that we learn from other countries and engaged with other agencies to influence policy.

Finally, delegates heard two perspectives from the Care Home Sector. Sharon Blackburn, Vice Chairman of the National Care Forum, gave a talk on the way forward for Care Homes. The National Care Forum aims to be the leading voice of the not-for-profit sector, and seeking to promote quality of care for all its customers, it embraces a wide range of services. The primary aims of care home providers are as follows:

-        to see the person before the disease/ disability/ diagnosis
-        to provide a real person centered approach
-        to promote and implement and person-centered culture
-        to enable the person to live a fulfilling life.

The Mental Capacity Act, she said, supports this person centered approach and protects this, through setting up a structure for a person’s opinions to be heard and acted upon.

Andrew Makin, Director of Nursing for the registered Nursing Home Association, spoke about the stabilizing effect the MCA will have of care provision in homes. He said, “This is going to make our lives a lot easier”. Previously in the private sector, doctors have been scared to make decisions about death, but with the new regulations, they have a structure within which they can act more confidently. Care homes, he argued, are the best place for people to die: “in hospitals, death is considered a failure of service, in care homes, it is a culmination”.

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