What is palliative care?

Abstract

In 1990, the World Health Organisation (WHO) recognised palliative care as a distinct specialty dedicated to relieving suffering and improving quality of life for patients with life-limiting illnesses or serious injuries. Fourteen years later, the WHO in its publication ‘Global Atlas of Palliative Care at the End of Life’, projected that, ‘each year in the world, around 377 per 100,000 of the adult (over 15 years of age) population and 63 per 100,000 of the child population (under 15 years of age) will require “palliative care at the end of life’. This article will discuss what constitutes palliative care, the different elements of palliative care, the approaches to palliative care, specialist palliative care services, end of life care and where GPs fit into this area. We will also be sharing tips on providing palliative care as a GP and for GP trainees.

Clinical case scenario

Mr John Glen has requested a home visit because he is unable to cope with his back pain. He understands that his cancer has spread, is incurable and that his pain is caused by spinal metastases. He has gone through the ReSPECT form which reveals: ‘a preference for comfort over life-sustaining treatment and not for CPR’. His preferred place of care is his home. He currently lives with his wife who is also his primary carer.

The summary record reveals that John is 50 years old with a history of prostate cancer, spinal metastases, coronary artery disease and hypertension. His medication includes amlodipine, aspirin, atorvastatin, opiate analgesia, bulk laxatives and cyclizine.

Origins: From there to here

‘Notes on Nursing’, a compilation of Florence Nightingale’s notes published in 1859, affirms what we now know for a fact that ‘suffering extends beyond the physical effects of illness and that nursing can reduce suffering without treating the disease’. Palliative care in its present form owes its origins to Dame Cicely Saunders, who founded St. Christopher’s Hospice in London in 1967. Others who contributed to present day palliative care include Douglas Macmillan who founded the Society for the Prevention and Relief of Cancer (now better known as the Macmillan Cancer Support) and the founders of Marie Curie Cancer Care, a charity dedicated to alleviating suffering from cancer.

Dame Cicely Saunders brought medicine back to one of its fundamental positions, that the whole patient is the concern of the doctor and not just the illness. She established in her research that morphine given to patients with cancer pain posed no risk of addiction and achieved excellent control of pain in the majority of patients. The concept of palliative care, which Dame Cicely started, has now evolved beyond the singular concept of care for only the dying to include patients and their families, during illness and after death.

The International Association for Hospice and Palliative Care defines palliative care as:

the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers.

It is all-encompassing care that is not limited to any one disease condition or any one aspect of a patient’s concerns, but is holistic – including all aspects. The attributes of palliative care are listed in Box 1.

Box 1.

Attributes of palliative care.

• Includes, prevention, early identification, comprehensive assessment and management of physical issues, including pain and other distressing symptoms, psychological distress, spiritual distress and social needs. Whenever possible, these interventions must be evidence based

• Provides support to help patients live as fully as possible until death by facilitating effective communication, helping them and their families determine goals of care

• Is applicable throughout the course of an illness, according to the patient’s needs

• Is provided in conjunction with disease-modifying therapies whenever needed

• May positively influence the course of illness

• Intends neither to hasten nor postpone death, affirms life, and recognises dying as a natural process

• Provides support to the family and the caregivers during the patient’s illness, and in their own bereavement

• Is delivered recognising and respecting the cultural values and beliefs of the patient and the family

• Is applicable throughout all healthcare settings (place of residence and institutions) and in all levels (primary to tertiary).

• Can be provided by professionals with basic palliative care training

• Requires specialist palliative care with a multi-professional team for referral of complex cases

Types of palliative care

Palliative medicine was recognised as a stand-alone specialty in the UK in 1987, and since then has built up a considerable amount of evidence locally and internationally to support the practice of palliative care. As palliative medicine offers individualised practice there is a recognised role for narrative-based evidence and stories in the practice of palliative care.

Palliative approach

The overall goal of a palliative approach is to improve an individual’s quality of life and reduce suffering. It is integral and fundamental to all good clinical care regardless of stage of illness.

Specialist palliative care

Specialist palliative care is care provided by specialised services – with professionals trained in and dedicated exclusively to palliative care – for patients with complex problems not adequately covered by other treatment options. This is needed when the patient’s care needs expand beyond the scope of the primary care team.

Primary palliative care

Primary palliative care can be defined as (Australian Institute of Health and Welfare, 2005):

the clinical management and care coordination including assessment, triage, and referral using a palliative approach for patients with uncomplicated needs associated with a life limiting illness and/or end of life care. Has formal links with a specialist palliative care provider for purposes of referral, consultation and access to specialist care as necessary

Supportive care

Supportive care was developed in oncology to describe non-chemotherapeutic palliation for those with cancer. It is not the same as palliative care, but palliative care is an essential part of it. Although developed in oncology, it has been found to be helpful in managing diseases other than oncology.

Hospice care

In the UK, ‘hospice’ usually refers to inpatient palliative care units, dedicated to those with advanced illness. They also deliver complex symptom control and psycho-social care, as well as care in the last days of life, and (sometimes) respite care.

Care in the last days of life

Care in the last days of life deals with the type of care that patients and their families receive when they are near death or are dying. It is the specific application of palliative care interventions in the last hours /days/weeks of life.

Components of an ideal specialist palliative care programme

To ensure that the palliative needs of patients are met in their different locations and at the times when it is needed each locality needs:

A hospital-based palliative care consultation service

A daycare service and/or specialist palliative care ambulatory clinic

A palliative care in-patient unit or dedicated palliative care hospital beds

A bereavement programme

Training for both specialist palliative care professionals and professionals who do not specialise in palliative care, such as GPs and district/community nurses

Research to support palliative care development and innovation

Over the years, the need for palliative care has been rising steadily and has not been adequately met. Due to slow policy development and insufficient resources, there has been an increasing push to include palliative care in national policies to increase access, resources, and delivery. The national End of Life Care Strategy in 2008 was one of the first national strategy statements in the UK extended to end of life care.

In 2015, the UK was ranked number 1 in the Economic Intelligence Unit’s Quality of Death ranking. This was based on the UK’s ‘comprehensive national policies, the extensive integration of palliative care into the National Health Service, and a strong hospice movement’.

As of 2015 the UK had:

223 hospice and adult palliative care in-patient units

3200 hospice and palliative care beds

291 home care services

129 hospice-at-home services

275 daycare centres

346 hospital support services

43 children hospice in-patient units with 338 hospice beds

Who needs palliative care?

About 1% of the population of the UK dies each year, and of this number about 53% die in hospital (with regional variations). We know that 20% of hospital beds are used for patients with advanced disease and most hospital resources are used for patients in the last year of their lives. It is challenging to determine if a patient is at risk of deteriorating and dying. To help with this problem, some tools have been developed to help identify patients at risk of deteriorating and dying, possibly with unmet palliative care needs. ‘The RCGP palliative and end of life care tool kit’ is a treasure trove of resources for GPs and GP trainees. Like every other medical specialty, good palliative care requires knowledge, skills and a good attitude to patients (See Box 2).

Box 2.

Requirements for the palliative care provider.

Knowledge about:

• Diseases and their natural history

• The potential causes of symptoms

• Drugs and their safe use

• Palliative care services and how to access them

Skilled in:

• Communication

You will need to be:

• Empathetic

• Holistic in your approach and

• Compassionate in your care

The palliative care team

The palliative care team is made up of both general and specialist care professionals. The general care professionals include, but are not limited to:

The GP

The district or community nurses

Social workers

Care workers

Spiritual care professionals

They will refer to the specialist team if the need arises. Getting to know your local specialist palliative care professionals is invaluable, as a phone call or conversation can often address any issues quickly.

The specialist care professionals include:

Palliative care doctors

Nurses and nurse specialists

Counsellors and psychologists

Specialist health professionals, such as physiotherapists, occupational therapists, dieticians, social workers and chaplains

Symptom management in palliative care

An array of varied symptoms is managed in palliative care. Some of these symptoms may be related to the disease process whereas others relate to the impact of the disease on the body. Some others may be due to the body losing its functional reserves. Common symptoms in palliative care are listed in Box 3.

Box 3.

Common symptoms in palliative care.

• Pain

• Nausea and vomiting

• Constipation

• Dyspnoea

• Agitation/restlessness

• Eating problems

• Anorexia

• Depression

• Diarrhoea

• Dry mouth

• Hiccups

• Insomnia

• Anxiety

The syringe driver is a battery-powered pump that delivers a continuous dose of medication subcutaneously over 24 hours. It is used extensively in palliative care to achieve optimal symptom control, especially towards end of life; however, they are used at other stages as well. The syringe driver is most commonly used in the following symptoms:

Pain

Feeling sick and vomiting

Seizures (fits)

Agitation

Excess respiratory secretions

Breathlessness

Further details can be found in Box 4.

Box 4.

Indications for the use of a syringe driver.

• Persistent nausea and/or vomiting

• Dysphagia

• Bowel obstruction or malabsorption

• Significant tablet burden

• Reduced level of consciousness such as in the last days of life

Pain

Pain can be intractable and will vary depending on site, cause and type of pain. Understanding these different characteristics of pain makes it easier to manage. It is important to recognise each pain; most cancer patients, for example, will have more than one type of pain, and each needs assessing separately if symptom control is to be effective. The WHO analgesic ladder is a great resource in deciding which analgesic, at what time and when to escalate treatment appropriately.

Nausea and vomiting

Nausea and vomiting are more often associated with cancer and its treatment modalities, but are also seen in other diseases especially towards the end of life. The aetiology of nausea varies greatly, so knowing the cause will help the choice of effective treatments. Possible causes of nausea and vomiting include medication side effects, infection, dysmotility, brain metastases and hypercalcemia. It is also known that constipation exacerbates nausea and vomiting.

Constipation

Constipation is a common presentation, especially in elderly patients, so prevention is always the best strategy, e.g. prescribing laxatives for individuals on opioids. Constipation can be caused by:

Reduced eating and drinking

Impaired/ reduced mobility

Drugs that impair gut motility including opioids

Complicating medical conditions e.g. haemorrhoids

A rectal examination should always be performed to rule out faecal impaction, which can cause urinary retention. It is important to address rectal loading by using rectal interventions such as suppositories and enemas, and to start laxatives to prevent a recurrence of the constipation. As a general measure, bulk-forming fibre agents have little role in palliative care, due to their tendency to be difficult to take when fluid intake is reduced.

Dyspnoea

Dyspnoea is a subjective feeling of breathing discomfort; it is common to those illnesses with an underlying primary or secondary respiratory component. The aetiology is usually multifactorial, but any underlying reversible cause should be sought and treated. Common causes include infection, malignancy, fluid overload, pleural effusion, anxiety, and muscle weakness. Treatment should adopt the Breathing, Thinking, Functioning (BTF) approach, if the patient is well enough to understand and work with this. The BTF approach is based on three predominant cognitive and behavioural reactions to breathlessness that, by causing a vicious cycle, can maintain and worsen the symptom, irrespective of the underlying disease that triggered the breathlessness initially

The vicious cycle is made up of:

Breathing: Increased respiratory rate, inappropriate accessory muscle use and dynamic hyperinflation, which can lead to inefficient breathing, and increased work of breathing

Thinking: Attention to the sensation of breathlessness, memories of past experiences, misconceptions and thoughts about dying. This can lead to anxiety, feelings of panic, frustration, anger and low mood

Functioning: Reduced activity, social isolation and reliance on help, which can lead to cardiovascular and muscular deconditioning

By engaging patients, this approach aims to turn these vicious cycles that can lead to breathlessness into cycles of improvement.

In latter stages of illness, pharmaceutical management is the main option.

Eating problems

Eating problems are seen in people with swallowing difficulties, including patients with stroke, dementia, Parkinson’s disease, head and neck malignancies, oesophageal or gastric cancers or other conditions that affect swallowing. In this situation treatment is usually with enteral feeding either through a nasogastric/jejunal tube or percutaneous endoscopic gastrostomy, radiologically inserted gastrostomy tube.

Agitation/restlessness

Agitation is a poorly defined, but well recognised, symptom of dying. It has a multifactorial cause and the choice of medication depends on other symptoms described. Common causes include drugs, cerebral pathology, infection and constipation, among others.

The role of the GP

Primary care physicians have an important role to play in the palliative care of patients in the community. In secondary care the patient’s prognosis has usually been discussed with the patient, if appropriate. Knowing the prognosis helps patients to plan appropriately for their treatment and possible death (Gold Standard Framework, 2011). The National Institute for Health and Care Excellence (NICE) advocates the use of a prognostic indicator guideline. The guideline is part of the Gold Standards Framework and aims to optimise the care of people nearing the end of life and cared for in the community. It includes asking the question ‘Would you be surprised if this patient were to die in the next 6 to 12 months?'

The task of communicating prognosis accurately to patients and their families without giving false hope or mixed information can be very challenging and this can harm the doctor–patient relationship (Ngo-Metzger et al., 2008). Hence, it is worth mentioning that there are risks associated with assessing prognosis. It is therefore important to emphasise to patients and their families that an estimate of prognosis is not a guarantee of future outcomes. Some of these risks include overestimating or underestimating the length of survival. It is often better to sensitively explore the patient’s own understanding and wish to know these details. Many have their own sense of how their illness is changing, and what time might be left. Some do not want to know the details. It is important to avoid a fixed prognosis that is almost invariably wrong. In general, talking in terms of ‘days’, ‘weeks’ or ‘months’ (as appropriate) is a better approach, saying ‘short days’ or ‘short weeks’ etc. if you want to communicate a shorter time.

Since palliative care involves medical treatment and the holistic management of patients (Watson et al., 2019), NICE has outlined different areas that physicians should address to achieve the aim of holistic care (NICE, 2020). The psycho-social aspect of palliative care is important. The majority of patients receiving palliative care services has a diagnosis of cancer, and up to one-third of these patients suffers some form of psychological distress, and those with non-cancer conditions also often need emotional support.

The prevalence of distress rises by 50% in patients with end-stage cancers and in the year after diagnosis, 10% of people have symptoms that require specialist intervention by psychiatric or psychology services (Hotopf et al., 2002; NICE, 2004). Hence, NICE has strongly recommended that physicians look out for symptoms that may indicate some form of psychological distress in patients during the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching. Clinicians should refer patients or their carers to specialist psychological care services if they have significant levels of psychological distress. Tools such as the hospital anxiety depression scale, patient health questionnaire, Beck depression inventory or simply asking the patient if they are depressed can all be used.

Another important aspect of palliative care is addressing patients’ and carers’ social needs. Assessing what social needs can be difficult at the initial stage, as patients may not know early on in their journey what support they may eventually require. It is left for the physicians to help patients identify and address these needs. NICE encourages offering patients and their carers informed professional assistance to obtain benefits for which they are eligible. It is also important to mention that they can obtain help with, for example, respite or day-care, support groups, volunteer visitors, assisted transport and bereavement care (from local authorities, NHS, or a non-governmental organisation such as Cruse).

Physicians should also learn how to assess the needs of the family and carers, a person’s religious or spiritual needs, and how to address them accordingly. In summary, care of people with advanced Illness by health and social care professionals, should be based on locally agreed protocols and guidelines and delivered within the context of a defined pathway. GPs and district nurses should be involved at an early stage and should liaise with the local specialist palliative care team for guidance and support. There are resources worth mentioning that aid healthcare professionals providing palliative care and these are outlined in Box 5.

Box 5.

Resources for healthcare professionals.

• The Gold Standards Framework — also includes guidance on advance care planning and has developed an advance statement of wishes template to support discussion and recording of a person's preference for place of care. It also supports good communication and coordination of care, with a practice Supportive Care Register. For more information, see www.goldstandardsframework.nhs.uk

• The Leadership Alliance for the Care of Dying People has published new standards of care that dying people and their families should expect to receive. This takes the form of five new Priorities for Care and replaces the Liverpool Care Pathway. For more information, see www.nhsiq.nhs.UK (pdf)

• The End of Life Care Patient Charter developed by the Royal College of General Practitioners (RCGP) and the Royal College of Nursing — implements the key recommendations of the RCGP's End of Life Care Strategy (RCGP, 2020).

• The Prognostic Indicator Guidelines can be used to estimate prognosis. It is part of the Gold Standards Framework and aims to optimise the care of people nearing the end of their life and are being looked after by primary care teams in the community. It includes the question ‘Would you be surprised if this patient were to die in the next 6 to 12 months?' to try to identify people nearing the end of their lives

• The General Medical Council's guidance for doctors, Treatment and care towards the end of life: Good practice in decision making has detailed information regarding issues of advance care planning, advance requests and refusals for treatment, recording and communicating decisions, and discussions about whether to attempt cardiopulmonary resuscitation (General Medical Council, 2010).

End of life care

End of life care is support for people in the last days/weeks/months of life. To diagnose that a person is approaching the last few days of life is challenging and often hampered by co-morbidities and chronic illnesses making prediction of disease trajectory difficult. This is why excellent communication and shared decision making are so important in the care of patients.

Good communication and open discussion enables patients to express their preferences for type of care and place of care, for example. Advance care planning aims to achieve an understanding, encapsulated in a document that clearly frames the patient’s priorities and wishes for future care and treatment, particularly apt in advance of the deterioration in a patient’s condition preventing clear communication of wants and wishes. Examples of advance care planning documents include:

Advance statements

Advance statements are not legally binding, but should be considered carefully when future decisions are being made. They can include any information the person considers important to their health and care.

Lasting power of attorney

A lasting power of attorney involves giving one or more people legal authority to make decisions about health and welfare. There is a separate lasting power of attorney that covers property and finances.

Advance decisions

Advance decisions concern decisions to refuse specific medical treatments and are legally binding. Too often the approach in these discussions is focused more on what not to do e.g. avoiding resuscitation and neglect rather than what needs to be done actively to support patients and families through the end of life process. Ideally advance care planning should happen in the earlier stages of the disease, the Mental Capacity Act provides a legal framework for this process in the United Kingdom.

Anticipatory prescribing/just-in-case medications

Anticipatory medications are ‘medication prescribed in anticipation of symptoms, (they are) designed to enable rapid relief at whatever time the patient develops distressing symptoms’ (NICE 2017). The approach to just-in-case medications are individualised, but there are certain common symptoms that can be anticipated in a dying patient. These include: agitation, nausea/vomiting, pain and increased respiratory secretions. Commonly prescribed drugs include morphine, midazolam, hyoscine butyl bromide and levomepromazine. The drugs are prescribed either by the hospital doctor, specialist nurse or GP after reviewing the patient’s illness and symptoms. In the community, the prescription is made on a community drug chart stating the dose, route, frequency, indication(s), limits, and when to seek advice.

The Gold Standards Framework

The Gold Standards Framework (GSF) is an evidence-based approach to optimise the care of patients nearing the end of life in the community, see Fig. 1. It was developed in 2001 based on experiences in primary care and is aimed at improving collaboration between primary palliative care and specialist care. In 2004, the programme was adapted for use in care homes and is now the largest UK programme undertaken to improve end of life care in care homes. The key tasks of the framework are captured in the 7 C’s: Communication, co-ordination, control of symptoms, continuity including out of hours, continued learning, carer support and care in the dying phase

Figure 1.

The Gold Standard Framework.

The GSF in care homes is aimed at:

Improving the quality of care for people nearing the end of life in care homes

Improving collaboration between care homes, GPs/primary care teams and specialist palliative care teams

Reducing the number of admissions to hospital in the last stages of life and enable more to die in the care home.

Preferred priorities for care

Developed by the Lancashire and South Cumbria cancer services network and formerly called Preferred Place of Care (PPC), it is a patient record designed to facilitate patient choice in relation to end of life issues. It records a patient’s preferences with respect to different aspects of care including preferred place of care and death.

It is now a nationally recognised tool for all palliative care patients as recommended by NICE in its guidance on supportive and palliative care for adults with cancer (NICE, 2004). As with other tools the PPC also records the available services and reasons for any changes in the care pathway.

Recommended summary plan for emergency care and treatment (ReSPECT)

Popularly known as the ReSPECT form, this was developed to replace the DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) form as it was found to have limitations that led to misunderstandings and miscommunication between patients and healthcare personnel. The ReSPECT form, when used correctly, can provide an individualised shared plan between the clinician and the patient, and covers treatments that may or may not be necessary when the patient deteriorates or is not in a position to make a clear treatment choice. It also helps first responders to determine which treatments are necessary and which are not. It can be complementary to a wider process of advance/anticipatory care planning.

The ReSPECT process can be for anyone but will have increasing relevance for people who have complex health needs, people who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest. Some people will want to record their care and treatment preferences for other reasons” (Resuscitation Council UK).

Conclusion

Palliative care should be part and parcel of holistic medicine, which involves looking after the whole individual and not just the individual’s disease. In most, if not all, aspects of healthcare, healthcare practitioners will have contact with patients nearing the end of life or with advanced disease. Good care of these patients requires professional competence and acquiring the necessary knowledge and skills is of paramount importance for GPs. Each person is more than the sum of their illnesses.

So, open your eyes, nurse

Open and see,

Not a crabbit old woman,

Look close - See ME

Phyllis McCormack, Crabbit Old Woman, 1966.

KEY POINTS

Palliative care is a key competence for healthcare professionals

Palliative care is much more than the care of the dying

The GP is an essential part of the community palliative care team

Shared decision making is of utmost importance in having conversations about palliative care, advanced care planning etc.

Palliative care can go on synchronously with active treatment

Knowledge, skills and the right attitude will make you relevant to patients needing palliative care

Footnotes

Acknowledgment

Professor Fliss Murtagh and Hannah Coysh are thanked for commenting on the early drafts of this manuscript.

ORCID iD

Dr Francis Odukwe

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