✅ Priorities of Care for the Dying Person

Duties and Responsibilities of Health and Care Staff

Recognise

The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.

1. The person whose condition has deteriorated unexpectedly must be assessed by a doctor who is competent to judge whether the person’s change in condition is potentially reversible or they are likely to die in the next few hours or few days.
2. If it is clear that reversing the deterioration in a person’s condition is possible their consent to treatment must be sought including discussion of the benefits, burdens and risks. If it is established that the person lacks capacity at that time to make
3. If the doctor judges that the person is likely to die soon, s/he must clearly and sensitively communicate this to the dying person (if conscious). This includes explaining when and how death might be expected to occur and the basis for that judgement, acknowledging and accepting any uncertainty about the prognosis, and giving the dying person the opportunity to ask questions. The same communication must take place with those important to the dying person and others involved in that person’s care. The responsibility for communicating this information may be delegated by the doctor to another clinician who has the appropriate training and competence.
4. The decision must be reviewed at the next available opportunity by a senior clinician within the person’s care team who is competent to assess whether the person has reached the stage where they are dying. The views of the wider multi-professional team must be taken into consideration in making this assessment.
5. The goals of treatment and care must be discussed and agreed with the dying person, involving those identified as important to them and the multidisciplinary team caring for the person. These discussions must be clearly documented and accessible to all those involved in the person’s care, taking into account the person’s wishes about sharing their confidential information. Doctors and nurses must acknowledge, accept and communicate uncertainty that exists about the prognosis.
6. If it is established that the dying person lacks capacity to make decisions about the goals of treatment and care, the goals must be discussed and agreed with any holder of a lasting power of attorney to make healthcare decisions on the person’s behalf and discussed with those identified as important to them, with the aim of reaching a consensus on what future treatment and care would be in the person’s best interests.
7. The dying person must be reviewed by a senior clinician within the person’s care team at least daily thereafter – or sooner if there is an unanticipated change in the person’s condition – to assess whether they are still likely to be dying (given the uncertainties of prognosis), and if the plan of care remains appropriate. The senior clinician may delegate this responsibility to another clinician who has appropriate training and competence but will remain accountable for the overall care of the dying person.
8. The senior clinician must consider whether involvement of a specialist would be helpful if there is uncertainty whether or not the person is dying.
9. Doctors, nurses and other health and care staff responsible for the person’s care must seek out opportunities to communicate about any deterioration or change in the dying person’s condition with those identified as important to that person.

Communicate

Sensitive communication takes place between staff and the dying person, and those identified as important to them.

1. Health and care staff must make time to talk with dying people, their families and those identified as important to them, including carers. They must listen, respond sensitively to their issues and concerns, provide information in a way that meets their communication needs and check that explanations and information are understood.
2. All relevant discussions must be in simple, appropriate, straight forward language without using euphemisms.
3. Sensitive communication includes the need for health and care staff to respect the wishes of people who have made it clear that they do not wish to have open conversations about their condition or what is happening to them.
4. Health and care staff must ask the person who they want to be contacted and with whom they wish information about their condition to be shared. They must also ask if there are specific individuals with whom they do not wish information to be shared. This must be clearly recorded and shared with all who care for the person particularly if they move between care settings, e.g. hospital to home.
5. Health and care staff have legal duties and ethical responsibilities to protect confidential information about a patient. Professional and other guidance set out the circumstances in which confidential information can be shared with the person’s family and others. Within those guidelines, health and care staff must recognise and address the communication and information needs of the dying person’s family and others identified as important to them. Where there is no record to the contrary and the person does not have capacity to give consent, it is reasonable to assume that they would want their family and those important to them to be informed about their condition and prognosis.The content and outcome of all discussions must be documented and accessible to all those involved in the person’s care. This includes conversations about prognosis, goals of treatment and care plans at each point in time, and particular concerns that the person and/or family carers have expressed.
6. The content and outcome of all discussions must be documented and accessible to all those involved in the person’s care. This includes conversations about prognosis, goals of treatment and care plans at each point in time, and particular concerns that the person, their family and those identified as important to them have expressed.
7. Difficult conversations must not be avoided but must be carried out sensitively, recognising that communication is an on-going process and not a one-off event.Assumptions must not be made about the frequency of communication that might be acceptable to the person, their families and those important to them. Staff must check this with them.
8. When it has been established that a dying person lacks capacity to make a particular decision, the Mental Capacity Act requires that any decision made is in the best interests of the dying person. It also sets out who can make decisions about the person’s health and welfare. What this means in practice, for the role of family members and others important to the dying person, should be explained in clear, understandable language by health and care staff involved in the care of the dying person.
9. Assumptions must not be made about the frequency of communication that might be acceptable to the person, their families and those important to them. Staff must check this with them.
10. The way in which information about the person’s needs, wishes and views can be shared with those identified as important to them and staff, must be discussed with the person, so that the method used is in accordance with individual preferences. For example, shared information folders or diaries may be a helpful way of enhancing communication for some. Those who have visual impairment may prefer to use other means for conveying their wishes, e.g. using a CD or DVD.
11. When the dying person is being cared for at home, the named GP, senior responsible doctor or named nurse responsible for the person’s care must ensure that families and carers of the dying person are given clear, reliable and consistent information about how to seek urgent help when this is needed, including who to ring, what number(s) to use at any time of day or night, and what key information they should provide that will facilitate the most appropriate response. This must include information about what to do when the person dies.
12. As soon as possible after the death of the person, and depending on the family’s wishes, a health care professional should offer to attend the person to ensure their body is appropriately cared for and the immediate practical and emotional needs of those present and those important to the person are attended to.

Involve

The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

1. Clinical teams must give the dying person, their families and those important to them the name of the senior doctor in the team who has overall responsibility for providing appropriate treatment and care for the dying person, and explain how that responsibility is handed over in times of absence or change in care arrangements or settings. This must be clearly documented and accessible to all those involved in the person’s care.
2. The name of the nurse responsible for leading the care of the dying person must also be given to the person and those important to them with an explanation of how this responsibility is handed over. This must be clearly documented and accessible to all those involved in the person’s care.
3. Health and care staff must give the dying person the information they need or are asking for in a way they can understand, and the support they need to make informed decisions about treatment options.
4. All decisions must involve consideration of the potential benefits, burdens and risks of treatment (or non-treatment) for the individual person. Individuals must be supported to make informed decisions as much as possible and to the extent they wish.
5. The dying person’s wishes about the extent to which families and those important to them are involved in discussing their treatment and care must be respected and supported.
6. Health and care staff must understand the difference between explaining what is going on (including any decisions made); seeking the person’s consent for specific interventions or actions; and consulting the person’s family and those important to them about making a best interests decision.
7. The dying person should be given all the help and support they need to make a decision before anyone concludes that they cannot make their own decision. Any actions taken or decisions made on behalf of someone who lacks capacity must be done in their best interests, after considering what is known about their preferences (and any relevant and valid advance decision to refuse medical treatment), and wherever possible still involving them in making the decision.
8. Doctors, nurses and other healthcare professionals must carefully consider which decisions need to be made on-the-spot to ensure the person’s comfort and safety, and which can and must wait for a review of the person’s condition by the senior doctor who has responsibility for the person’s treatment and care (who may know the person better and/or have relevant competence and information to inform treatment decisions) or a clinician with the appropriate training and competence to whom the responsibility has been delegated.
9. The starting point of communication between health and care staff and the family and those important to the person must be that all parties wish to act in the person’s best interests. Differences in opinion, about how to work towards agreement on what would be best for the dying person, must be discussed openly and additional advice sought, including a second opinion, where there is a continuing difference of opinion or if additional reassurance would be helpful.
10. The dying person’s senior doctor is responsible for ensuring that adequate information is available to support decision-making by those involved in caring for the person when the senior doctor is not available.
11. If a healthcare professional is considering withdrawing or not starting a potentially life-prolonging but burdensome treatment, because it is not considered clinically appropriate in managing the person’s care, they must explore in a sensitive way how willing the dying person might be to know about and discuss this or whether they would prefer that this is discussed with those identified as important to them.
12. If there is a continuing difference of opinion about the treatment or care of a dying person, or if additional reassurance about a decision would be helpful, health and care staff must consider obtaining a second opinion and getting support to facilitate communication to reach a consensus, for example from a social worker, advocacy worker or a chaplain or faith community leader, especially if the difference of opinion is expressed in relation to religious beliefs or concerns. If significant disagreement remains, staff must seek advice on applying to the court for an independent ruling and inform the dying person (and those important to them) as early as possible.

Support

The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

1. Health and care staff must regularly assess and address (if possible) the needs of families and those important to the dying person, and offer information about getting access to other sources of help and support.
2. Health and care staff in in-patient facilities must ensure families are welcome and enabled to spend time with the dying person to the extent that they and the dying person wish.
3. Family or important others who wish to participate in caring for the dying person in an in-patient facility must be supported by staff to do so, e.g. by showing them simple practical techniques, but assumptions must not be made about their ability or wish to do so.
4. In some situations, the dying person, or their family or carer may be more skilled at performing certain tasks than the health and care staff. Their expertise must be acknowledged and they must be supported to continue performing these tasks while they remain willing and able to do so.
5. Where the person’s family or those identified as important to them are involved in the care of the dying person, their observations and judgements must be taken into account as part of the ongoing discussion and planning of care.
6. Health and care staff must acknowledge that the needs of the dying person, their families and those important to them may differ. Differences must be acknowledged and addressed in a sensitive way. For example, children and elderly people important to the dying person may have particular needs for practical and emotional support that require careful consideration by health and care staff.
7. Some families do not wish to talk openly about death and dying. This must be respected but health and care staff must find a sensitive way to remain clear in their communication, and to avoid euphemisms.
8. If the dying person is in hospital or another institution, staff must pay attention to the wellbeing of families and those important to the dying person by showing them where the toilets are located, where to make drinks, how they can rest, etc.
9. Health and care staff must offer information and explanations to the dying person’s family and those important to them, including carers, to prepare them for what happens when a person is close to death, whether the death is occurring at home or in an institution.
10. When a person is imminently dying, the responsible nurse or other healthcare professional must check with the dying person’s family and those important to them about how they would best wish to be supported. Some prefer to be left alone; others prefer a staff member to briefly check in with them every now and then; others may need more support. Importantly, they need to know where staff are if they are needed.
11. The family and those important to the dying person, including carers, may have their own spiritual and religious needs which may, or may not, be similar to that of the dying person. Staff must involve chaplains or relevant religious leaders if the family and those important to the person want this.
12. When a person has died, the wellbeing of the bereaved family and carers must be considered, and health and care staff must ensure adequate support is available for their immediate needs. They must be allowed time with the deceased person, if they wish, without being put under pressure.
13. Families and those important to the dying person will require additional support if the death has been unexpected or if it occurs after a very short deterioration, for example help to understand post mortem, coroners’ and death certification procedures, and to have their questions answered.

Plan & Do

An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.

1. Health and care staff must offer the dying person the opportunity to discuss, record and update their wishes and preferences as part of individualised care planning. Ideally, this planning should have started earlier in the illness and the plan updated as the situation changes. The extent to which the dying person wishes to be involved in developing a plan of care must be respected; so must their wishes about who else to involve in these discussions.
2. Where a nominated friend/family member has been identified by the dying person to take part in care planning, they must be involved in the preparation of the plan of care.
3. Health and care staff must take account of and give weight to the views, beliefs and values of the person in agreeing the plan of care. If it is established that a dying person lacks capacity to make particular decisions and their wishes and views about future care cannot be ascertained, then the decisions made must be in the person’s best interests. The observations and judgements of those involved in the person’s care (formal and informal) must be taken into account in ongoing discussions and planning of care.
4. The individual plan of care must be agreed, communicated, adhered to and regularly reviewed, with the person and, if they agree, those important to them.

Assessment

5. The person’s physical, emotional, psychological, spiritual, cultural and religious needs must be assessed to formulate personalised plans to address these needs, in discussion with the dying person and, if they wish, their family or those important to them.
6. Assessment must be conducted with respect for personal privacy and dignity. Aids to communication that the person normally uses, e.g. spectacles, hearing aids, dentures, must be used.
7. The frequency of review and how the person’s comfort is monitored, including the use of assessment tools, must be individualised and agreed with the person and, if it is established that the person lacks capacity to make decisions about these matters, the decisions made must be in the person’s best interests.
8. Health and care staff must ensure that important assessments of a patient’s condition, capacity to decide, or treatment and care needs (e.g. swallowing) are conducted openly and family and others important to the dying person are provided with clear explanations and involved where that may provide helpful information about the dying person to ensure an effective assessment is made, provided this does not delay attending to the dying person’s needs.
9. Health and care staff must ensure that disagreement about the outcome of assessments are swiftly acknowledged and acted upon, creating opportunity for discussion, reflection and allowing alternative opinions. If there is significant disagreement about a person’s capacity to make a decision, which has not been resolved through informal, local procedures, staff must seek advice about obtaining a ruling from the court (as required by the Mental Capacity Act).

Food and drink

10. The dying person must be supported to eat and drink as long as they wish to do so and there is no serious risk of harm (for example through choking). However if there is likely to be a delay in assessing their ability to swallow safely, alternative forms of hydration must be considered and discussed with the person. Nursing and medical records on the assessment of intake must be kept.
11. If a dying person makes an informed choice to eat or drink, even if they are deemed to be at risk of aspiration, this must be respected.
12. If the dying person is unable to swallow, decisions about clinically assisted hydration and nutrition must be in line with the General Medical Council 2010 guidance Treatment and care towards the end of life: good practice in decision-making and relevant clinical guidelines.
13. Health and care staff must pay attention to the dying person’s mouth care and other personal care needs to maintain their comfort and dignity.

Symptom control

14. All medications, including anticipatory medicines, must be targeted at specific symptoms, have a clinical rationale for the starting dose, be regularly reviewed, and adjusted as needed for effect.
15. The reason for any intervention, including the use of a syringe driver, must be explained to the dying person and to those important to the dying person. Other than in exceptional circumstances, this should be done before it is used.
16. The likely side effects of specific interventions, especially those that may make the person sleepy, must be discussed with the dying person to enable them to make informed decisions, and explained to those important to the dying person if the person wishes.
17. Health and care staff must ensure that medicines, equipment and other aids that can improve the dying person’s comfort and dignity are obtained as soon as this is needed, or in anticipation of needs if the person is not in hospital.
18. If paramedical or ambulance staff are called to a dying person at home or in a care home because the person has symptoms, they must assess and wherever possible manage symptoms in accordance with the person’s preferences and agreed care plans. This may include decisions about whether or not to transfer the dying person to hospital or another care facility. Where the dying person’s preferences or care plan are not known or clear, ambulance clinicians must seek senior ambulance clinical advice and/or contact the GP/primary care out of hours provider if required to obtain urgent clinical advice first.
19. Clinical teams must refer to specialist palliative care for advice or assessment when the person’s needs (or the needs of those important to them) are beyond their competency to provide for, or when initial measures have failed to provide adequate relief within at most 24 hours.

Spiritual and religious care

20. When specialist spiritual/religious support is identified as required, health and care staff must ensure that the dying person, and those important to them, have ready access to information about the available chaplaincy and/or spiritual care provision.
21. The chaplains must have information about local faith leaders to enable, where requested by the person, referral to church or faith community leaders.
22. Staff, must find out from the dying person, their family and those important to them, the details of any cultural or religious-specific requirements, including what constitutes respectful treatment of the body after death.

Co-ordinating care

23. Health and care staff must ensure they provide accurate and timely handover to teams taking over care, particularly regarding the person’s wishes.
24. Adequate care planning information about the dying person must be available to ensure safe and appropriate clinical decisions are made regarding care and treatment, taking into account the individual’s prior wishes, in the event that the dying person is unable to participate in the decision at the time.
25. If a dying person has to move between care settings, a clear emergency plan must be made and communicated so that action appropriate to the person’s needs and preferences can be taken if their condition changes unexpectedly.
26. Where there is inadequate time to determine the person’s wishes about, or suitability for, attempts at cardiopulmonary resuscitation, DNACPR (Do Not Attempt Cardio-pulmonary Resuscitation) documentation from another care setting or care provider should be taken into account, and followed where the healthcare professional making the decision is certain that s/he has sufficient information about the person to judge that the DNACPR is valid and applicable.

Sourcehttps://southtees.nhs.uk/content/uploads/Priorities-of-care-for-the-dying-person-June-2014.pdf