Chapter 1: Introduction to Palliative Care and Palliative Nursing Practice
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.
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. The fundamental goal of palliative care is to manage and, where possible, relieve a patient's symptoms.
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 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. 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, and supporting the person's family, etc.
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.
- Pulmonary disease.
- Liver disease.
- Kidney disease.
- Neurological conditions.
- Incurable viral diseases.
- Congenital conditions.
- Severe traumatic injury.
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 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.
Palliative care is fundamentally multidisciplinary in nature. In the UK, professionals who provide palliative care include general and specialist nurses and doctors, allied health practitioners, counsellors / psychologists, hospice staff, respite staff, grief / bereavement workers, chaplains and complementary therapists, etc.
Palliative care is also patient- and family-centred. This means that it is focused on meeting the unique needs of each individual patient and family. The patient and their family 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, and to choose the types of interventions, if any, they wish to receive during their palliation. These decisions are recorded in 'advance decision' documents.
The role of the palliative care nurse
The nurse's roles and responsibilities in caring for a patient 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.
- Assessing the effectiveness of this care, and making recommendations for changes if required.
- Assessing the patient's additional needs, 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.
- 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
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. 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.
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 for palliative care nurses. It also develops policies and manages campaigns aimed at improving the provision of palliative care in the UK.
Palliative nursing values
Palliative care and palliative nursing practice has a number of key values. The NHS' five priorities for palliative care 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 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.
- 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.
- The provision of palliative care actively involves those people who are important to a patient.
- 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.
- 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.
- The patient should be helped to do the things they perceive to be important in preparing for their death.
- 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. Consider an example given following:
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.
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.
There are a variety of legal and ethical issues relevant to the palliative care nursing context:
- Right to refuse.
- Competence and capacity.
- Proxy decision-making.
- Euthanasia or 'assisted suicide'.
- The provision of artificial nutrition and hydration.
- Withholding or withdrawing other life-prolonging treatments.
- Organ and / or body donation.
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.
This chapter began by comprehensively defining palliative care and palliative nursing, and went on to consider the multidisciplinary nature of palliative care, the diverse role of palliative nurses and the current context of palliative nursing practice in the UK. Finally, it analysed some of the complex legal and ethical issues relevant to practice in a palliative care setting in the UK.
NHS Choices. (2015). What to Expect from End-of-Life Care. Retrieved from: http://nhs.uk/Planners/end-of-life-care/Pages/what-to-expect-from-care.aspx