I have the right to end of life care that respects my wishes
The Charter of Rights for People with Dementia and their Carers in Scotland states… ( >1)
When this right is respected
People with dementia have the right to the highest attainable standard of physical and mental health.
People with dementia and their carers have the right to full participation in care needs assessment, planning, deciding and arranging care, support and treatment, including advanced decision making.
People with dementia will
Have access to the full range of palliative care services and good quality compassionate care towards the end of life.
Receive the support they need to die with dignity and in the place of their choosing wherever possible.
Receive care towards the end of life that respects their previously expressed wishes.
Will not experience inhuman or degrading treatment at the end of their life. ( >3)
People with dementia will...
Have access to a full range of palliative care services.
People with dementia have the same right of access to palliative care services as anyone else.
NHS Boards will ensure that
The person with dementia is given the opportunity, if they wish; to consider an anticipatory care plan and advance care planning that will be reviewed at least annually. ( >23)
The anticipatory care plan and any other advance planning made will be recorded in the primary care record and shared with those providing care.
Assessment and review of palliative care needs using recognised assessment tools will include physical, social, emotional and spiritual needs.
Any care plan will be person centred, taking into account the needs, wishes and preferences of the person with dementia and their carer.
People with dementia will be included on the palliative care register where clinically indicated and appropriate.
Referral for specialist palliative care services will be made, if required, wherever the person with dementia is living.
Staff across all care settings know how to get specialist advice and assistance if required.
Receive end of life care that respects their wishes.
Towards the end of life
People with dementia and their carers may need support from a variety of NHS and local authority services to continue living at home and to die there if that is their wish.
NHS Boards, local authorities and other care providers will ensure that
Specialist palliative care services are provided in a variety of settings, including hospitals, care homes and people's own home and that the person with dementia is not moved from their home in the last few days of life unless absolutely necessary.
Specialist multidisciplinary assessment and advice is available if required including dietary and specialist swallowing assessment.
Staff caring for the person with dementia know about any advance planning that has been made, including if a decision has been made about resuscitation and active management of symptoms. ( >24)
If a decision has been made not to resuscitate, this will be in accordance with national guidelines. ( >24)
Pain relief is available, pain is well controlled and staff use observational pain assessment tools.
Encouragement and support is given to family and friends to continue to be involved in planning and delivering care.
Staff respect the faith and cultural preferences of the person with dementia and should enquire into matters if the information is not already available.
In the last days and hours of life, the care given should be guided by the Liverpool care pathway. ( >25)
Staff are able to provide bereavement support at the time of death including guidance about what to do next and where family and friends can receive ongoing bereavement support service, if required.
Mr Smith was diagnosed with dementia around the time of his retirement. In addition, he had various physical complaints that worried him, including heart disease and high blood pressure.
Shortly after his diagnosis he met with a Community Psychiatric Nurse ( CPN) from the local community mental health team to discuss thinking ahead and making plans for the future.
During this initial meeting they discussed the things that Mr Smith and his wife and family might want to think about, such as appointing his wife as his welfare and financial power of attorney and thinking about the care and treatment he would want in the future.
Some months later he shared with his CPN that he was worried about his death; he did not fear death itself but worried that he might not be in control of what was happening, which was his biggest fear. He had seen his own father die in pain and distress and did not want to put his family through the same thing.
The CPN contacted the GP practice and arranged a meeting with the practice nurse, who knew Mr and Mrs Smith well, to discuss advance care planning. They discussed things that the couple might want to consider, including the medical treatment Mr Smith would and wouldn't want if he became physically very unwell.
Mr Smith prepared a statement of wishes relating to his future care, which was signed and witnessed and a copy placed in his medical notes. The practice nurse also prepared an anticipatory care plan, which included details of his illness and the care he would want to receive in the event of his health deteriorating rapidly. She gave a copy to Mr and Mrs Smith and also placed a copy in the practice notes. Mr Smith was placed on the practice's palliative care register. This meant that the anticipatory care plan formed part of a palliative care summary. Mr Smith's consented to the transfer of information collected by his GP practice to a central information store, making this available to Out of Hours services, NHS 24 and Accident and Emergency services.
Over the next 12 months, Mr Smith's physical and mental health deteriorated rapidly. He was admitted briefly to a cardiology unit to try and stabilise his heart condition but he found his stay there to be confusing and distressing. He was offered major surgery for his heart condition but was no longer able to make decisions about his health care so his wife, as his welfare power of attorney, declined the treatment as it seemed to be of little benefit to him. Mrs Smith was sure that her husband would not want any further invasive treatment.
With limited life expectancy it was decided that, in keeping with his previously expressed wishes, he should remain at home if possible and the necessary community care support arrangements were put in place to make sure this happened, and to provide support for Mrs Smith.
A lack of planning
Mr Andrew was admitted to an NHS continuing mental health care ward two years ago; he had complex care needs, was physically frail and had dementia.
His physical condition had been deteriorating for some weeks; he was taking little food or fluid and had been confined to bed for a few days.
During the night he was found to have a very high temperature and seemed to be in pain, so the nurse asked the on call doctor to attend. The doctor examined him and found he had a severe chest infection and dehydration. There was no plan in the care file about how this was to be managed and Mr Andrew was unable to express his views. The doctor arranged for admission to the local general hospital for fluids and antibiotics through a drip.
He was admitted via Accident and Emergency to an acute admission ward and his family were informed of his admission.
Mr Andrew was distressed to be somewhere he did not know with people who did not know him. He became increasingly distressed and noisy and other patients were showing obvious annoyance at the level of disturbance.
He was examined by a senior doctor who decided to stop giving active treatment and to focus instead on keeping him comfortable over the next few days.
Mr Andrew was visited by his family who found him very noisy and distressed and asked that he be given pain relief as they thought his distress was caused by pain and discomfort. He responded well to the pain relief.
His family were upset that they were not involved in, or informed of, the decision to withdraw treatment and to put in place a do not attempt resuscitation order.
They did not disagree with the decisions, but were upset that there had been no plan in place to manage his expected physical deterioration or their views sought about how this should be managed. They felt his transfer to the general hospital had been unnecessary and distressing for him.
Arrangements were made to transfer Mr Andrew back to the NHS continuing care ward the next day but, unfortunately, he died that night.