Service available in:

Death and dying are inevitable. Being able to live as well as possible until we die is something that we all value. The needs of people of all ages who are living with dying, death and bereavement, their families, carers and communities, must be addressed, considering their priorities, preferences and wishes. Personalised care in the last year(s) and months of life will result in a better experience, tailored around what really matters to the person, and more sustainable health and care services (NHS England).

Palliative care is the holistic care of patients with advanced, progressive, incurable illness, focused on the management of a patient’s pain and other distressing symptoms and the provision of psychological, social and spiritual support to patients and their family. Palliative care is not dependent on diagnosis or prognosis and can be provided at any stage of a patient’s illness, not only in the last few days of life. The objective is to support patients to live as well as possible until they die and to die with dignity (GMC, 2022).    

Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes:

  • Patients whose death is expected within hours or days
  • Patients who have advanced, progressive incurable conditions
  • Patients with general frailty and coexisting conditions that mean they are expected to die within 12 months
  • Patients at risk of dying from a sudden acute crisis in an existing condition
  • Patients with life threatening, acute conditions caused by sudden catastrophic events.

The term ‘approaching the end of life’ can also apply to:

  • Extremely premature neonates whose prospects for survival are known to be very poor
  • Patients who are diagnosed as being in a persistent vegetative state (PVS) for whom a decision to withdraw treatment and care may lead to their death (GMC 2022).          

Use evidence based tools to aid decision making. Our regional and local model for planning care for palliative and EOLC patients is the North West Model for Life Limiting Conditions (NWM). This should be used in conjunction with Gold Standard Framework.

image.png

Gold Standards Framework (GSF) is a national model to identify where a patient may be in their disease trajectory.

GSF recommends starting with the surprise question “Would you be surprised if your patient was to die in the next 12 months?” 

If you wouldn’t be surprised, your patient/resident should be discussed at your next GSF/MDT/Palliative meeting. At this meeting there should be a decision made what timeframe your patient/resident may be at: for example blue (years), green (months), amber (weeks) or red (days).  Care should be planned according to the GSF and the North West Model for Life Limiting Conditions (NWM).

Signs that a person is in the last few weeks or months of life

 

The World Health Organisation (WHO) states that palliative care is explicitly recognised under the human right to health. It should be provided through person centred and integrated health services that pay special attention to the specific needs and preferences of individuals. 

What is Advance Care Planning?

ACP is a voluntary process of person centred discussion between an individual and their care providers about their preferences and priorities for their future care, while they have the mental capacity for meaningful conversation about these. The process, which is likely to involve several conversations over time, must have due consideration and respect for the person’s wishes and emotions at all times. As a result, the person should experience a greater sense of confidence, involvement and the opportunity to reflect and share what matters most to them.  It should not be assumed that everyone wants to have ACP conversations when offered. Their wishes should be respected. If people decline, this can be sensitively revisited later. 

How to have a conversation around Advance Care Planning

People don't like to talk about death.  But talking about what kind of death you want can have many benefits. 

What are the benefits?

When ACP is done well, people feel they have had the opportunity to plan for their future care. They feel more confident that their care and treatment will be focused on what matters most to them if, at a future point, they are unable to fully participate in decision making. This can give them a greater sense of control of their own lives.  ACP benefits the patient/resident, their family, carers, those important to them, and health and social care professionals.  People are more likely to achieve their wishes for their end of life care when ACP is documented. 

When can ACP be discussed?

The best time to approach a patient/resident to offer an ACP discussion is when there is a change in their condition, if they approach a health professional with concerns, or if they identify a preference for their future care. 

Who can open the discussion?

Anyone who has had training in ACP and who feels confident in their communication skills can have a conversation with a patient/resident about their future care.  A patient/resident may choose you to have these important conversations because they feel they trust you and have built a relationship with you. From these conversations, which may happen over time, your patient/resident may identify their preferred place of care (PPC) and their preferred place of death (PPD).  Choices should be discussed such as home, hospice, care home or hospital.

Where is ACP documented?

An Advance Statement (AS) to informally document preferred place of care and preferred place of death, goals for care and treatment, values, wishes, preferences and priorities, and may include nomination of a named spokesperson. It is important to include discussions about spirituality and religion; the following website has useful information. If you wish to increase spiritual awareness and improve your confidence in assessing and meeting the spiritual and religious needs of patients/resident and families please see Spiritual Gates – Opening the Spiritual Gate.  ACPs should be shared with health and social care professional involved in a patient’s/residents care.

How and why is ACP shared?

It is important that, with permission, ACPs and best interest decisions are shared with the health and social care professionals involved in the person’s care. There must be clarity about who the plan is shared with (eg GP, ambulance services, district nurses, hospitals, care homes, domiciliary care staff, specialist teams involved in the person’s care, out of hours services, and those important to the person who may be contacted in an emergency), why and how. Shared plans are accessed by clinicians so that clinical decisions are made in line with individual preferences as far as possible and within the Mental Capacity Act. Clinicians can share advance care planning information via the patients/resident electronic records (EMIS) with professionals involved in their care. If the professionals involved in the patient's/resident care have no access to EMIS (eg care homes/hospices/hospitals) please use the ACP notification form.  

National ACP documents and online tools:

National and regional ACP guidance and resources:

Personalised care planning ICARE and Share

NHS England — North West Personalised Care Planning – Cheshire and Merseyside

Last days and hours of life what to consider

This may be the time that plans can be actioned such as ACP, individualised care planning, Unified Do Not Attempt Cardiopulmonary Resuscitation (uDNACPR) and anticipatory clinical management planning as described in ACP. 

When it is recognised that the patient/resident may be entering their final days of life, communication is key when coordinating care.  Ensure that all reversible causes of deterioration have been explored, a decision by the most senior clinician involved in the patient/resident care, usually the GP or a consultant, should be made that the patient/resident is dying and this should be sensitively communicated to the patient/resident where possible and those important to them. 

The North West Model for Life Limiting conditions should be followed and the patients colour code changed to red days NHS England » North West Model for Life Limiting Conditions. This will help teams prioritise care. 

How to recognise that a patient is dying 

Provide practical support and information about what to expect when someone is dying and ensure they have contact numbers for the teams caring for the patient/resident. Involve the patient/resident and those important to them in planning care and ensure information is shared. Commence an individualised plan of care for the last days of life so that everyone involved in the patient’s/residents care can see who is doing what, where and when.  All care and communication should be documented in the patients/resident record. One Chance to Get It Right.

There should be a conversation with those people important to your patient/resident about what should happen after they die. Things to include should be symptoms of the dying process such as breathing changes. It should be explained to them that there is no rush, this was to be expected and that they can spend some time with their loved one after they have died. They should be advised to contact their community nursing team and their GP. 

Conversations may be difficult at this time and you may feel you need support from more senior colleagues.  This is ok; recognising your limitations, confidence and competence is important.  These conversations become easier with experience. 

There may be symptoms that require careful monitoring and review. The following document may support decisions about anticipatory medications at the end of life. Palliative Care Clinical Practice Summary second edition 2021.

Nutrition and hydration in the last days of life

Care after death and learning from death

When your patient/resident has died and this was expected with a plan in place, nurses who have received training in Verification of Expected Death (VOED) can be contacted to visit the patient/resident so the VOED policy and the North West Model for Life Limiting conditions care after death can be followed NHS England — North West Model for Life Limiting Conditions

When a  patient/resident with learning disability or autism dies, the LeDaR process must be followed: and  NHS England » Learning from lives and deaths – People with a learning disability and autistic people (LeDeR).

Certification of death

Certification of death is the process of completing the 'Medical Certificate of the Cause of Death' (MCCD) by a medical practitioner in accordance with The Births and Deaths Registration Act 1953, underpinning the legal requirements for recording a person's death.

Any medical practitioner (doctor) who has attended the deceased within their lifetime can complete an MCCD if they can establish the cause of death to the best of their knowledge and belief, and the death is not required to be notified to the coroner.

Although there is no legal definition of 'attended', it is generally accepted to mean a medical practitioner who has cared for the patient and who is familiar with the patient's medical history, investigations and treatments. The attending practitioner must also have access to relevant medical records and the results of investigations. It is a legal requirement for a medical practitioner who meets the necessary criteria to establish the cause of death and complete the MCCD. 

If the medical practitioner has not seen the person prior to death, then they will need to view the deceased directly and not via video link. This can take place either in the patient's home or in the funeral directors.

The following advice should be given to the family and those important to the deceased:

  • The GP will sign the Medical Certificate of the Cause of Death (MCCD) and send this to the Medical Examiner's office.
  • The Medical Examiner has five days to scrutinise the cause of death and may contact the family to give them the opportunity to ask any questions and confirm the cause of death before countersigning the MCCD certificate.
  • The Medical Examiner sends the certificate to the local registry office who will contact the family to come in and register the death.
  • The family should wait to receive the death certificate before booking a funeral with a funeral director in case there is further examination required by the coroner. Please refer family to 'What to do when someone dies: step by step' - GOV.UK (www.gov.uk)

National / regional guidance

Learning from deaths

Reflection is a good way to discuss both good deaths and those we have found difficult.  Using the below form will give structure to your reflection and can be done either as an individual or as a team.  You can also utilise this reflective practice as part of the revalidation process and clinical supervision. 

To care for a person as an individual means being sensitive to their unique set of relationships with family, friends, carers, other loved ones, and their community. Providers of palliative and end of life care must seek to support this network by helping them to help the person who is dying. This help includes supporting them in their own preparation for bereavement. This support must be available, sensitive and tailored to the context of their individual needs. This obligation extends to the care that is needed in response to sudden death and suicide. Good end of life care encompasses support to help people manage the impact of such unexpected or traumatic death on those who are bereaved. NHS England » Ambitions for Palliative and End of Life Care: A national framework for local action 2021-2026.

The team that provided support may also wish to either contact the bereaved relative / carer by phone or schedule a post bereavement visit.  This gives bereaved relatives / carers the opportunity to give us feedback and all contacts should be documented in the patient’s/residents records. 

There is a normal process of grief that follows the loss of a loved one. If your bereaved family are struggling with grief, you may need to signpost them for support and advice. If your patient/resident was cared for by a local hospice, they offer support for up to one year after the loss of a loved one.

Local links

National links

National and Trust links

  • Benefits

The ‘Special Rules’: how the benefit system supports people nearing the end of life

Education is provided:

  • For St Helens and Knowsley community teams by the ACP team and Specialist Palliative Care. See front page for contact details.
  • For Liverpool and Sefton community teams by the Specialist Palliative Care Team. Their contact number is 0300 100 1002.
  • For Southport and Formby community teams by Queens Court Hospice Transform Team. Their contact number is 01704 517927.
  • End of Life Care - e-Learning for Healthcare

Organisations

Links relevant web sites

Contact details

The Specialist Palliative Care Teams are available 24 hours. 

Contact the relevant team using the details below:

Knowsley and St Helens

24 hour Specialist Palliative Care Advice Line - 0330 058 2850

Liverpool and South Sefton

For advice or referrals call Integrated Mersey Palliative Care Team (IMPaCT) 24 hour - 0300 100 1002

Southport and Formby

For advice or referrals call, Specialist Palliative Care Professionals 24 hour - 01704 517 422

Advance Care Planning Team

Useful links