Read Standard 11: Palliative care and bereavement

Congenital heart disease (CHD) standards
Healthcare Improvement Scotland

Standard statement

NHS boards provide high quality and compassionate palliative and bereavement care.

Rationale

Palliative care is a crucial part of integrated, person centered health services. It is recognised under people’s international right to health.77 Palliative care improves the quality of life of people who are affected by life-threatening or life-limiting illness.78 For people with particular congenital conditions, ongoing assessment and anticipatory care planning should be provided from an early age.79 Meaningful conversations should take place with the person with CHD, and where appropriate their families/representatives, throughout their life. These conversations should take place in the context of the person’s cultural or religious beliefs.80 People with learning disabilities or additional needs may need support to understand what may happen. A range of services should be involved to meet people’s specific needs at the end of their life.

Criteria

11.1

People with CHD are fully informed about what their future quality of life may be and are involved in ongoing discussions about their prognosis.

11.2

People with CHD are involved in anticipatory care planning and conversations about palliative care that:

  • are held early in their journey
  • are appropriately timed
  • support and empower them to live their life
  • involve families/representatives where appropriate
  • involve professionals with whom they have an ongoing relationship
  • are supportive, respectful and compassionate
  • meet their social, cultural and communication needs , including the use of signing or Easy Read information.
11.3

Families/representatives of people with CHD are involved in discussions where appropriate, and supported.

11.4

Each NHS board provides access to palliative care and referral pathways to specialist palliative care involving, as required:

  • perinatal bereavement support services
  • a local congenital cardiac nurse
  • specialist nursing teams such as heart failure specialist nursing
  • clinical or practitioner psychology teams  primary care
  • third sector support.
11.5

NHS boards ensure robust and effective communication between services during anticipatory care planning and at the point of death, including ongoing bereavement support.

11.6

When death occurs, either expected or unexpected, NHS boards have protocols and policies in place in line with national guidance to ensure:

  • joint child death review, including input from families
  • a designated lead or key contact for overseeing the review process and a key contact for families/representatives
  • notification to local cardiac services and other relevant services
  • access to the post mortem and written report of the post mortem
  • multidisciplinary learning and review processes as required.
11.7

In the instance of a child’s death:

  • families can access an independent key contact for information
  • families are provided with compassionate support
  • there is a joint child death review, including input from families/representatives
11.8

Each NHS board has established pathways for bereavement support for the families/representatives of people with CHD throughout their life.

11.9

NHS boards provide bereavement education, training and support for staff including peer support and signposting to support services if required.

What does this standard mean for...

What does the standard mean for people with CHD?

  • Staff talk to you and the people important to you about how you can expect your condition to develop in the future.
  • You are involved and listened to in discussions about how to manage your condition in the future.
  • Your care towards the end of your life upholds your rights and provides you with dignity, compassion and respect.
  • Your family/representatives get the support they need when you die.

What does the standard mean for staff?

Staff:

  • are trained and skilled to talk about end of life care and bereavement
  • are involved in compassionate discussions about palliative care at the right time
  • know how to refer to specialist palliative care services if they need them
  • are supported as needed when patients die.

What does the standard mean for the organisation?

NHS Boards:

  • have effective referral pathways for palliative and end of life care for people with CHD
  • provide training and support to staff working in palliative care and following bereavement
  • provide information required as part of child death reviews
  • ensure people who are dying are treated with respect, dignity and compassion.

Examples of what meeting this standard might look like

  • Referral pathways to specialist palliative and end of life care.
  • Provision of specialist nursing, including a local congenital cardiac nurse.
  • Documented anticipatory care plans shared between services and relevant professionals, including primary care.