Identifying patients in the last years of life
We 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.
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).
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.
- View our Advance Statement form
- View our easy read version of Advance Statement form
- An Advance Decision to Refuse Treatment (ADRT) to formally document a refusal of a specific treatment in specific circumstances. This must be documented, signed, witnessed and shared with health and social care professional involved in a patient’s/residents care. Click here for ADRT form
- Nomination of a Lasting Power of Attorney (LPA) for health and welfare who is legally empowered to make decisions up to, or including, life sustaining treatment on behalf of the person if they do not have mental capacity at the time, depending on the level of authority granted by the person.
- Make, register or end a lasting power of attorney ( LPA)
- Context specific treatment recommendations such as emergency care and treatment plans, treatment escalation plans, cardiopulmonary resuscitation decisions, etc.
- Best Interest Decisions (BI) for a patient/resident who lacks capacity to document what a person would have wanted from past discussions and what is known about their wishes and preferences, beliefs and values. Making Decisions in Someone’s Best Interest
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.
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 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 » North West Model for Life Limiting Conditions. This will help teams prioritise care.
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 2nd edition 2021.
All deaths should be reported via RADAR.
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 » 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).
National / regional guidance
- What to do when someone dies: step by step - GOV.UK (www.gov.uk)
- Hospice UK Care after death Care After Death guidance
- Hospice UK Verification of death by registered nurse Care After Death: Registered Nurse Verification of Expected Adult Death 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.