Introduction to Palliative Care and Palliative Nursing Practice Lecture

Introduction

This chapter provides a broad introduction to palliative care and palliative nursing as a practice speciality in the United Kingdom (UK). It begins by comprehensively defining palliative care and palliative nursing, identifying it as a specialty which requires nurses to work with a variety of patients, manage various clinical conditions, and practice in a range of different settings. The chapter goes on to consider the multidisciplinary nature of palliative care, the diverse role of palliative nurses, the current context of palliative nursing practice in the UK, and options for undergraduate and postgraduate pathways into the speciality. Finally, it analyses some of the complex legal and ethical issues relevant to practice in a palliative care setting in the UK. The aim of this chapter is to provide you with a general overview of palliative nursing as a practice speciality, and so to prepare you for your progression through the remainder of this module, and for your practice as a nurse in a palliative care setting.

Learning objectives for this chapter

By the end of this chapter, we would like you:

-To define palliative nurses' diverse scope, roles and required skills / knowledge.

-To describe the palliative nursing context - including the diverse types of patients, presentations and settings in which palliative nurses in the UK practice.

-To be familiar with the pathways into palliative nursing practice in the UK.

-To be able to list the broad values shared by palliative nurses internationally.

-To understand some of the complex legal and ethical issues relevant to palliative nursing practice.

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What are palliative care and palliative nursing?

Palliative care is care that is given to a person at the end of their life; for this reason, it is often referred to as 'end-of-life care'. Rather than extending the patient's quantity of life, the goal of palliative care is to improve the quality of their life. Palliative care therefore differs significantly from traditional medical (or nursing) care - it is not curative (i.e. aimed at curing the person's medical condition/s); rather, it aims to facilitate a patient's comfortable transition to death. Palliative care takes a holistic, or 'whole person', approach, caring for a person - and their family, carers and significant others - physically, psychologically, socially and spiritually. The fundamental goal of palliative care is to manage and, where possible, relieve a patient's symptoms (e.g. pain, dyspnoea, nausea / vomiting, fatigue, psychological distress, etc.).

Read the World Health Organisation's definition of palliative care following:

Quote:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:

- Provides relief from pain and other distressing symptoms;

- Affirms life and regards dying as a normal process;

- Intends neither to hasten or postpone death;

- Integrates the psychological and spiritual aspects of patient care;

- Offers a support system to help patients live as actively as possible until death;

- Offers a support system to help the family cope during the patients illness and in their own bereavement;

- Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

- Will enhance quality of life, and may also positively influence the course of illness;

- Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

(World Health Organisation, 2016).

Palliative nursing is a practice specialty which requires nurses to work with a variety of patients, manage various clinical conditions, and practice in a range of different settings. In the UK, palliative care is provided to people in almost all settings where normal health care is provided: at home, in residential care homes, in acute hospitals, in general practice settings, and in specialist community services hospices. Patients may receive palliative care on an inpatient or outpatient / community basis. The type of palliative care a person receives depends on the nature of their illness, the care available in the area in which they live, and their or their family's preferences. It is important to remember that palliative care is provided to people of all ages with life-limiting conditions, including babies, children, adolescents, adults and the elderly. As you will see later in this section of this chapter, these people may have a one or more of a variety of conditions which will result in their death.

It is important to understand that palliative care is not only provided to a person in the days or hours immediately prior to their death. Many patients with life-limiting illnesses receive palliative care for weeks, months or even years prior to their death. In the UK, people are considered to be approaching the end of their life - and, so, are eligible for palliative care - when medical practitioners evaluate that they will likely die in the next twelve months (though, undoubtedly, this can be difficult to predict). People in the UK are eligible for palliative care, under the National Health Service (NHS), when:

  • Their death is 'imminent'.
  • They have an illness which is active, progressive and unlikely to be cured.
  • They are frail, have co-existing conditions, and are expected to die within 12 months.
  • They have a condition which places them at risk of death due to sudden crisis / deterioration.
  • They have a life-threatening, acute condition caused by a sudden catastrophic event.

Nurses working in palliative care settings must also remember that end-of-life care does not stop at the point of death. Following a person's death, a palliative care nurse is responsible for tasks such as ensuring the death is verified in a timely manner, caring for the body, fulfilling the person's wishes for organ donation (if applicable), and supporting the person's family, etc. You will study the nurse's role in caring for a patient at the immediate end-of-life and post-death in detail in a later chapter of this unit.

Remember: palliative care is provided to people with one or more medical conditions which are: (1) active, (2) progressive, and (3) are unlikely to be cured. As highlighted earlier in this section of the chapter, there are a variety of conditions for which a person in the UK may be palliated:

  • Cancer - including breast, ovarian, pancreatic, leukaemia, multiple myeloma, etc.
  • Diseases involving failure of the organs - for example:
    • Cardiac disease (e.g. congestive heart failure, massive myocardial infarct).
    • Pulmonary disease (e.g. chronic obstructive pulmonary disease [COPD]).
    • Liver disease (e.g. chronic hepatitis).
    • Kidney disease (e.g. renal failure).
  • Neurological conditions (e.g. massive stroke, Alzheimer's disease, Parkinson's disease, amyotrophic lateral sclerosis ['motor neurone disease'], etc.).
  • Incurable viral diseases (e.g. HIV/AIDS).
  • Congenital conditions (e.g. Edwards' Syndrome [Trisomy 18], Patau Syndrome [Trisomy 13]).
  • Severe traumatic injury (e.g. due to a road traffic crash, birth asphyxia, etc.). 

In some cases, patients may require specialist palliative care. This is a particularly intensive form of palliative care delivered by a highly-trained team of staff. Specialist palliative care is particularly appropriate for:

  • Patients who are expected to experience significant and / or complex problems as their health condition advances (e.g. severe pain, dyspnoea, choking, bleeding, etc.).
  • Patients with other complex issues (e.g. care involving ethical dilemmas, family or social issues, psychological comorbidities, etc.).

Consider the following case study example:

Example

Charlotte is a graduate nurse working in a children's hospice. One of her patients is Max, a four year old boy with a rare, aggressive ganglioneuroblastoma (a malignant cancer in the nerve tissue of the brain and spinal cord). Max has received twelve months of therapy - including high-dose chemotherapy with stem-cell rescue, radiotherapy, targeted drug therapy and a number of major surgeries. However, his ganglioneuroblastoma repeatedly returns.

Max is now demonstrating signs of significant neurological impairment and multi-organ failure. His oncology team recommend Max is palliated, with the aim of improving the quality of his remaining life. However, Max's parents disagree with this decision as they believe there is still a possibility that Max's cancer may be cured with drug therapies currently being trialled in the United States. Because of this conflict, Charlotte identifies Max as an ideal candidate for specialist palliative care.

Note that you will study legal and ethical dilemmas related to the palliative care context in greater detail in a later section of this unit.

It is important to highlight that patients in palliative care may progress towards death in one of a number of different ways. Review the images in the following page:

(Harris & Murray, 2013).

 A patient with terminal cancer is often quite well in the months prior to their death before experiencing a period of rapid, significant decline.

 A patient with organ failure often experiences slower, longer-term decline with intermittent episodes of serious complication - one of which will lead to their death.

 A patient with a neurological condition such as dementia have a variable - often erratic and unpredictable - trajectory of decline, though this is typically progressive.

Nurses working in palliative care settings must be prepared for each of these different care scenarios.

As you will see in greater detail in a later chapter of this module, one of the fundamental considerations for nurses providing palliative care is the culture of the patient receiving care. In this context, culture is considered to include more than a person's ethnicity and beliefs, etc.; rather, it is a broader concept which considers a patient's worldview, and their philosophies and preferences about living and dying. These factors are important in determining the type of palliative care provided to an individual patient, and the manner in which it is provided.

Palliative care is fundamentally multidisciplinary in nature. This means professionals from a range of disciplines work collaboratively to provide care to a single patient and their family. Multidisciplinary care is provided based on the understanding that many professionals working together can achieve more than individuals from any single profession working alone. In the UK, professionals who provide palliative care include general and specialist nurses and doctors, allied health practitioners (e.g. pharmacists, physiotherapists, social workers, etc.), counsellors / psychologists, hospice staff, respite staff, grief / bereavement workers, chaplains and complementary therapists, etc.

In addition to being multidisciplinary in nature, palliative care is also patient- and family-centred. This means it is focused on meeting the unique needs of each individual patient and family. The patient and their family, as appropriate, are actively involved in all relevant decisions related to the palliative care provided, to the greatest extent possible. There is a focus on allowing a person to decide where they die (including enabling people to remain at home if they choose to do so), and to choose the types of interventions, if any, they wish to receive during their palliation. These decisions are recorded in 'advance decision' documents, which are used to guide care provision and which you will study in greater detail in a later section of this chapter. The role of the patient's family, who usually know the patient best and are often the most effective form of support, is respected and promoted.

The role of the palliative care nurse

As described throughout this chapter, nurses play a crucial role in the planning and provision of palliative care in the UK. Let's explore this role in relation to the following case study:

Example

Mrs Brown is a fifty-eight year old woman with metastatic cancer; the cancer originated in her cervix, but spread progressively to her lung, liver and bones. Her most distressing symptom is severe abdominal pain, which limits her capacity to perform activities of daily living (e.g. bathing, dressing, cooking, eating, mobilising, etc.). Her pain is managed with a potent combination of medications - including a narcotic analgesic, a tricyclic antidepressant, a neuroleptic and a steroid - which have side-effects such as severe constipation and nausea. Mrs Brown has been receiving palliative care in her home, supported by her husband and specialist palliative care nurses (who visit twice daily).

The nurse's roles and responsibilities in caring for a patient such as the one in the case study above include:

  • The development of a positive therapeutic relationship, ensuring the patient and their family feel comfortable discussing complex and emotional topics.
  • Working with the patient and their family to identify, and document, care-related decisions, and to update these if required as the patient's conditions / needs change.
  • Participating in meetings with the multidisciplinary team to plan and evaluate care.
  • Providing direct care (e.g. medications [including for pain relief], assistance with activities of daily living, support with mobility, nutrition and communication, etc.).
  • Assessing the effectiveness of this care, and making recommendations for changes if required.
  • Assessing the patient's additional needs (e.g. support from social workers, chaplains, etc.), and facilitating the provision of this care wherever possible.
  • Researching and recommending standard and alternative care options for the patient.
  • Working collaboratively with the multidisciplinary team to facilitate the patient's preferred options for care, where available and to the greatest extent possible.
  • Advocating for the patient to be cared for in the place of their choice, receiving care of their choice - even if this contravenes standard and widely-accepted practices.
  • Educating the patient and their family about the condition, its prognosis, the goals of treatment, the intended outcomes and the likely progression to death, etc.
  • Supporting the patient's family / carers / significant others, both practically and emotionally. 

The context of palliative nursing practice in the UK

As you have seen throughout earlier sections of this unit, palliative care in the UK is a diverse specialty practice area which requires nurses to work with a variety of patients, manage various clinical conditions, and practice in a range of different settings. There is an ever-increasing need in the UK for additional, high-quality palliative care services. The think tank Demos estimates that care at the end-of-life consumes at least one-fifth of the UK's NHS budget - approximately £20 billion annually. The National Audit Office estimates that 40% of patients in the UK at the end-of-life who are admitted to hospital for care have no medical need to be there (though there is a pervasive view in the UK about the 'acceptability' of dying in hospital). The King's Fund identifies improving the management of care at the end-of-life in the UK as one of its top ten priorities. As described earlier, nurses play a crucial role in the delivery of effective palliative care in the UK, and also in contributing to improvements in the provision of palliative services.

Currently, palliative nursing is not one of the specialist fields which UK nursing students can study as part of their undergraduate nursing degree. However, the specialist fields of adult nursing or children's nursing in particular may both provide opportunities for nurses, once graduated and registered, to work in a palliative care context. Nurses may also undertake a postgraduate qualification - for example, a diploma, which usually includes a dissertation component - to build their knowledge, skills and qualifications for employment in a palliative care setting. Depending on the type of postgraduate qualification undertaken, nurses may also specialise in a particular area of palliative care - for example, paediatric palliative care, geriatric palliative care, oncology services, or neurological services, etc.

The National Council for Palliative Care (NCPC) represents all those working, or wishing to work, in palliative care settings in the UK - including nurses. The NCPC provides a variety of useful information, events and professional development opportunities (e.g. training) for palliative care nurses. It also develops policies and manages campaigns aimed at improving the provision of palliative care in the UK. You are encouraged to visit the NCPC's website, which can be accessed online by searching for its title.

Activity

You are encouraged to read the NCPC publication Every moment counts: A narrative for person-centred coordinated care for people near the end of life. This document can be accessed online by searching for its title.

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Palliative nursing values

Palliative care and palliative nursing practice has a number of key values. To begin this section, let's look at the NHS' five priorities for palliative care, which communicate a number of these key values:

  • Patients receiving palliative care should be regularly reviewed by a medical doctor; if this doctor believes death is imminent, they must advise the patient and their family.
  • Staff involved in the patient's care must talk sensitively and honestly with the patient and their family about their condition, its prognosis and the goals of treatment, etc.
  • As described earlier in this chapter, the patient and their family (where appropriate) should be actively involved in all relevant decisions, to the greatest extent possible.
  • The needs of the patient and their family should be met to the greatest extent possible.
  • Each patient should have an individual plan for their palliative care, and this plan should be delivered with compassion.

(From NHS Choices, 2015).

Other values relevant to the palliative nursing context are listed following:

  • Palliative care is holistic, caring for a person physically, psychologically, socially and spiritually.
  • Palliative care is focused on improving quality of life (e.g. through symptom management).
  • Palliative care is multidisciplinary, with different professions collaborating to provide care.
  • Patients and their families are supported to make informed decisions about care.
  • The care provided is patient- and family-centred; people are supported to receive the care they want in the setting they choose, wherever possible.
  • The provision of palliative care actively involves those people who are important to a patient; these people are welcomed, listened to, respected, informed and involved by staff.
  • Palliative services are consistent with a community's perceptions and preferences about death.
  • Palliative care adapts to a person's beliefs, traditions, language, culture, way of life, etc.
  • The people who provide palliative care make an effort to understand a patient as an individual; the patient is respected as a person, not as an 'illness'.
  • Palliative care is initiated at the appropriate time for each individual patient.
  • Palliative care is fluid, and adapts to suit the changing needs of the patient and their family.
  • Palliative care is based on open, honest discussions among all those involved.
  • Palliative care is responsive to the patient's needs, and is timely.
  • The patient should continue to have leisure time, maintain social contact and achieve goals, where possible; they should be encouraged to live actively and independently.
  • The patient should be helped to do the things they perceive to be important in preparing for their death (e.g. saying goodbye, attending to their affairs, etc.).
  • The patient is provided with the education / information required to make informed decisions.
  • The patient receives continuity of care, including in relation to care provided after hours.

Legal and ethical issues

There are a variety of complex legal and ethical considerations involved in the provision of palliative care in the UK. You studied one example of a complex ethical scenario earlier in this chapter, involving a patient named Max. Consider another example given following:

Example

Callum is a graduate nurse working in an intensive care unit (ICU). He is caring for Edith, an eighty-seven year old woman who has experienced a massive haemorrhagic stroke. Edith is unconscious, though is breathing independently. Her family, which includes her oldest daughter Margaret, have agreed to palliative care. Margaret has also signed a 'do not attempt resuscitation' (DNAR) order; this authorises ICU staff to withhold cardiopulmonary resuscitation, should Edith's condition deteriorate, and so allow her death.

During Callum's shift, Edith's condition deteriorates progressively. Changes in her vital signs, including a decrease in Edith's respiratory rate, alert Callum that Edith's death is imminent. Callum gently informs Margaret and other members of her family of this situation. As requested, he arranges for the hospital chaplain to be present. Late in the shift, Edith ceases breathing. Margaret becomes distressed. Despite the DNAR order, Margaret says to Callum, "Do something!" How should Callum respond?

The answer to the question posed at the end of the case study above ultimately depends on: (1) the legislation in place in the jurisdiction in which the nurse practices, and (2) the ethical policies of the nurse's health care organisation and professional body. It is essential that nurses working in palliative care settings are familiar with their legal, ethical and professional obligations. This will be explored in greater detail throughout this section.

As you have seen throughout this chapter, nurses working in palliative care settings will commonly encounter legal and ethical issues. Ethical issues manifest whenever there are two opposing value systems at work, and there is more than one 'right' solution to a problem. Ethical decision-making involves working collaboratively with others - including the patient, their family, members of the multidisciplinary team and legal / ethical professionals (where required) etc. - to identify what is the 'most right' option in a given situation. Ethical decisions are grounded in legislation relevant to the nurse's context of practice.

There are a variety of legal and ethical issues relevant to the palliative care nursing context. Read through the examples provided following:

  • Confidentiality. This includes the right of a patient's family or significant others to access information about their condition and care. It is crucial that nurses working in palliative care settings understand with whom, and under what circumstances, they are permitted to share an individual patient's confidential information.
  • Right to refuse. As in all nursing contexts, patients receiving palliative care have the right to reuse treatment, including treatment which may sustain / prolong their life - provided they are considered competent, under the Mental Capacity Act, to do so.
  • Competence and capacity. In order to make decisions relevant to their care. A person must be considered competent to do so. However, determining competency can be complex, as a person's competency may change over time. It is important that nurses working in palliative care settings are familiar with their organisation's policies and procedures related to assessing a person's decision-making capacity.
  • Proxy decision-making. In many cases, a patient receiving palliative care will have appointed a proxy decision-maker - that is, a trusted person who can make decisions on their behalf, should they become unable to do so. Nurses working in palliative care settings must be familiar with proxy decision-making legislation relevant to the jurisdiction in which they practice.
  • Euthanasia or 'assisted suicide'. In palliative care settings, it is common for patients - and particularly those with distressing symptoms, such as severe pain or dyspnoea - to request that nurses assist them to die. Euthanasia is currently illegal in the UK.
  • The provision of artificial nutrition and hydration. Patients at the end of life are often unable to eat and drink; however, lack of nutrition and hydration may hasten death, and also result in a more uncomfortable death. It is essential that nurses working in palliative care settings understand their organisation's artificial nutrition and hydration policies and procedures, and each individual patient's relevant wishes.
  • Withholding or withdrawing other life-prolonging treatments. 
  • Organ and / or body donation. Patients have a right to decide what happens to their body after death. This includes the right to donate organ/s or the entire body, if the person so chooses. Nurses working in the palliative care context should familiarise themselves with the NHS Organ Donation Register.

There are also a variety of complex legal and ethical issues related to palliative care in the paediatric - specifically, the neonatal - nursing context. Factors such as increases in high-risk pregnancy, the use of assisted reproductive technologies and medical intervention during labour / delivery have resulted in larger numbers of babies born significantly compromised. Advances in medical technology mean that the lives of these babies may be saved, even if the chances of their medium- to long-term survival are low, their needs resource- and cost-intensive and their quality of life very poor. It is important that nurses working in paediatric and neonatal care settings are familiar with their organisation's policies and procedures related to palliative care, and that they actively contribute to improvements in palliative care in these settings.

Consider the following case study:

Example

Alexandra is a two-day-old baby who was born with multiple, severe birth defects related to the congenital condition Patau Syndrome (Trisomy 13). Alexandra's most urgent problem is structural abnormalities related to her trachea, which make it difficult for her to breathe. Alexandra's medical team know that they can correct the structural abnormalities in her trachea using a relatively simple surgical procedure. However, they also know that Alexandra is affected by a variety of other serious medical issues - including microcephaly (likely resulting in significant neurological impairment), failure of her heart and kidneys, cortical visual loss and optic nerve hypoplasia (resulting in blindness), and meningomyelocele (a spinal defect resulting in paralysis). The medical team also know that 80% of children born with Patau Syndrome do not survive their first year of life. Rather than attempt surgery, the team decide to discuss Alexandra's palliation with her family.

As you have seen throughout this section, there are a variety of legal and ethical issues relevant to the palliative care nursing context. In all nursing contexts, including in palliative care nursing, ethical decisions are based on a number of key concepts:

  • Autonomy: a commitment to enabling a patient to make decisions in their own best interests. This involves respecting what a patient themselves considers to be in their best interests, provided they have the capacity to decide on and communicate this.
  • Beneficence: doing good for the patient and relevant others, and non-maleficence: doing no harm to the patient or relevant others. This involves a process of weighing up the possible harms and the anticipated benefits of a therapy, to decide what is best.
  • Justice: ensuring the care provided to a patient is fair and equitable.
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Conclusion

This chapter has provided a broad introduction to palliative care and palliative nursing as a practice speciality in the United Kingdom (UK). It began by comprehensively defining palliative care and palliative nursing, identifying it as a specialty which requires nurses to work with a variety of patients, manage various clinical conditions, and practice in a range of different settings. The chapter went on to consider the multidisciplinary nature of palliative care, the diverse role of palliative nurses, the current context of palliative nursing practice in the UK, and options for undergraduate and postgraduate pathways into the speciality. Finally, it analysed some of the complex legal and ethical issues relevant to practice in a palliative care setting in the UK. In completing this chapter, you have begun your preparation for your practice as a nurse in a palliative care setting.

Reflection

Now we have reached the end of this chapter, you should be able:

-To define palliative nurses' diverse scope, roles and required skills / knowledge.

-To describe the palliative nursing context - including the diverse types of patients, presentations and settings in which palliative nurses in the UK practice.

-To be familiar with the pathways into palliative nursing practice in the UK.

-To be able to list the broad values shared by palliative nurses internationally.

-To understand the complex legal and ethical issues relevant to palliative nursing practice.


Reference list

Dixon, J., King, D., Matosevic, T., Clark, M. & Knapp, M. (2015). Equity in the Provision of Palliative Care in the UK: Review of Evidence. Retrieved from: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/equity-palliative-care-uk-report-full-lse.pdf

Faull, C., de Caestecker, S., Nicholson, A. & Black, F. (Eds). (2012). Handbook of Palliative Care (3rd ed.). Hoboken, NJ: Wiley-Blackwell.

Harris, I. & Murray, S.A. (2013). Can palliative care reduce futile treatment? A systematic review. BMJ Supportive & Palliative Care, 3(1), 389-398.

Hughes-Hallett, T., Craft, A., Davies, C., Mackay, I. & Nielsson, T. (2011). Funding the Right Care and Support for Everyone: Creating a Fair and Transparent Funding System - The Final Report of the Palliative Care Funding Review. Retrieved from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215107/dh_133105.pdf

Matzo M. & Witt Sherman, D. (Eds). (2010). Palliative Care Nursing: Quality to the End of Life (3rd ed.). New York, NY: Springer Publishing Company.

National Council for Palliative Care. (NDa). About Us. Retrieved from: http://www.ncpc.org.uk/about-ncpc

National Council for Palliative Care. (NDb). Every Moment Counts. Retrieved from: http://www.nationalvoices.org.uk/sites/default/files/public/publications/every_moment_counts.pdf

NHS Choices. (2015). What to Expect from End-of-Life Care. Retrieved from: http://www.nhs.uk/Planners/end-of-life-care/Pages/what-to-expect-from-care.aspx

NHS Choices. (2016). What Palliative Care Involves. Retrieved from: http://www.nhs.uk/Planners/end-of-life-care/Pages/what-it-involves-and-when-it-starts.aspx

NHS England. (2015). Developing a New Approach to Palliative Care Funding. Retrieved from: https://www.england.nhs.uk/wp-content/uploads/2015/03/dev-new-apprch-pallitv-care-fund.pdf

NHS England. (2016). NHS England Specialist Level Palliative Care. Retrieved from: https://www.england.nhs.uk/wp-content/uploads/2016/04/speclst-palliatv-care-comms-guid.pdf

World Health Organisation. (2016). Who Definition of Palliative Care. Retrieved from: http://www.who.int/cancer/palliative/definition/en/


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