Week 7: Palliative and End of Life Care

Learning Objectives
• Understand a cohesive and patient centred approach to the care planning of those with

palliative and end of life care needs.

• Explain the concept of holistic assessment and care in the palliative care setting.

• Describe the common needs and pathophysiological changes at the end-of-life.

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Contents
Learning Objectives ........................................................................................................................ 1

Introduction ..................................................................................................................................... 3

Living and dying well ..................................................................................................................... 4

Holistic assessment ......................................................................................................................... 5

Strategies for improving end of life in hospital and in other environments. .................................. 8

Communication and legal and ethical decision-making ............................................................... 10

References ..................................................................................................................................... 13

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Introduction

The bulk of deaths today occur in those over 65 years and above, with fewer period sickness

and/or frailty reported, which may have lasted longer in the past when many people died abruptly

and at any age, mostly from infectious illnesses (Meyer, 2022). Finding better ways to treat

sickness and extend life while, at the very least, avoiding undue physical and emotional suffering

to people who pass away is a key issue in hospital care. Boykin, Schoenhofer and Valentine,

(2014) argue that improving the culture of caring is necessary in the present healthcare context.

According to Mengual et al. (2023), it takes a health or social care worker with the appropriate

knowledge, abilities, competencies, attitudes, and behaviors to ensure quality of care and place

patients' needs at the center of healthcare. Care provided to persons suffering from and dying

from any difficult, protracted, or incurable ailment must include palliative and end-of-life care.

Palliative care's main goal is to improve the quality of life for patients and their families at every

stage of the disease, beginning with the diagnosis. It extends beyond offering care in a person's

final few weeks, days, or hours of life (Dzierżanowski, 2021).

Future care planning is essential for illness phases that are expected to result in shifting demands

on patients and caregivers. At certain points during the patient's journey, access to additional

assistance and specialized services, such as professional palliative care, will be necessary. Plans

for treatment and support should take into account the likelihood that patients with chronic

illness trajectory would alternate between stable periods and possible crises (Wichmann et al.,

2018). Thus, according to Kwame and Petrucka (2021), in order for patients and caregivers to

explore care and support alternatives with health and social care teams and make knowledgeable

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and practical decisions, it is critical to provide the right information and provide enough time for

conversation.

Living and dying well

At the onset of illness process, aggressive disease management should be combined with a

palliative care strategy where necessary (Hassankhani et al., 2020). In order to address the

medical, practical, functional, social, emotional, and spiritual needs of patients and caregivers

dealing with advancing illness and grief, palliative care adopts a holistic approach that places the

patient and not the disease as its center of attention. Any environment for palliative care must

prioritize effective communication between experts and patients and/or caregivers. Effective

inter-professional collaboration, particularly across organizational borders, systems, and

structures, can, however, play an even more significant role in guaranteeing the quality of

treatment and enriching the experience for patients and caregivers (Abu-Odah, Molassiotis and

Liu, 2020). The quality of life for patients and their caregivers can be improved by proactive care

planning and management, early symptom treatment, and the reduction of crises and unforeseen

hospital hospitalizations. In particular, anticipatory prescription should be used for complicated

requirements when rapid exacerbations are probable and for end-of-life medications (Motamedi

et al., 2021).

Although "diagnosing dying" is hardly easy, there is growing clinical knowledge in this field and

a growing understanding that the healthcare team's recognition and agreement that a patient is

approaching the dying phase enables the planning and delivery of appropriate treatment (Biradar,

2015). People in need of palliative and end-of-life care are easy to recognize and assess by use of

readily available instruments. These include implementing an integrated care pathway, such as

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the Liverpool Care pathway for the Dying Patient (LCP) in the final days of life, and utilizing a

palliative care registry and prognostic indicators in primary care as per the Gold Standards

Framework (Klapwijk et al., 2020).

Holistic assessment

For nurses working in all clinical settings, assessing patients is a crucial ability. In the context of

palliative care, assessment is crucial to ensuring that the patient's symptoms are adequately

addressed and that their passage to death is as comfortable as possible (Hagan et al., 2018).

Because it is comprehensive in nature, the evaluation of a patient getting palliative care is

different from the assessment of a patient receiving normal treatment.

A crucial skill for nurses working in all clinical settings is patient evaluation. There are three

stages to the typical nurse assessment:

• Observation of patient.

• Obtaining the patient's medical history.

• The patient is physically examined.

Each of the above steps of evaluation include interacting with a patient to gather both subjective

and objective data regarding the patient's measured indicators and self-reported symptoms. The

patient's requirements are determined using this data, which is also used to monitor the patient's

status while they get treatment, determine the sort of care they will receive, and determine the

efficacy of that care. In the context of palliative care, evaluation serves a fourth, additional role

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that allows for the efficient handling of death by identifying the patient's prognostic indicators of

impending death (Chu, White and Stone, 2019).

The goal of holistic care is to comprehend the patient as a whole person and to utilize that

understanding to determine and provide the best treatment feasible for each patient (Jasemi et al.,

2015). Holistic care context evaluation examines the patient more extensively and thoroughly,

concentrating on aspects like their psychological (and emotional), sociocultural, and spiritual

requirements in addition to their medical indications, symptoms, and problems (Demirsoy,

2017).

The following are important guidelines for conducting a holistic assessment:

• The assessment should be patient-centered and "concerns-led";

• Patient consent is required for the assessment process;

• Professionals conducting the assessment should have attained an agreed level of

competency in key aspects of assessment; and

• Patient preferences for communicating with specific professionals, their family and

friends, and other individuals

• Recognition of impending death

The identification and provision of quality care for patients nearing the end of life remain

challenging and often debated aspects of nursing practice, despite their significance for general

and palliative care professionals. Nurses must possess the ability to recognize whether an

individual is approaching death or not. This is essential for ensuring effective symptom

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management, informing decisions regarding appropriate levels of medical intervention,

considering potentially risky situations, and addressing various other concerns. Throughout

history, certain patient symptoms have been commonly recognized as indicators of impending

death, including extreme weakness, being confined to bed or in a comatose state, experiencing

difficulty consuming adequate fluids, changes in breathing patterns or breathlessness, alterations

in skin appearance, weak pulse, and decreasing blood pressure (Sleeman and Collis, 2013).

Factors affecting the quality of care at end of life

Everyone's life is impacted by the experience of end-of-life care. In affluent nations across the

world, dying in an acute hospital is a frequent occurrence. All healthcare systems must evaluate

and measure the quality of the treatment they deliver (Donnelly et al., 2018). The authors

identified several additional factors including extended stays in the intensive care unit, limited

understanding of the patient's condition and prognosis, instances of patients passing away in the

hospital despite expressing a preference to die at home, challenges in managing basic nursing

care and symptom control, patient anxiety, the need to consider prayer and meditation

requirements, the choice of care location, the use of feeding tubes, access to pastoral care, and

the importance of establishing a therapeutic alliance.. According to research done so far, it is

generally agreed that excellent end-of-life care is characterized by the careful treatment of pain

and other symptoms, patient autonomy and dignity, family support and engagement, awareness

of death, and effective communication with medical staff. The physical setting of the hospital is

acknowledged as being crucial to the treatment of patients who are terminally sick and gravely ill

(Akdeniz, Yardımcı and Kavukcu, 2021). The highlighted factors reflect the multifaceted and

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complex nature of end-of-life care which encompasses physical, medical, social, spiritual and

psychological experiences.

Strategies for improving end of life in hospital and in other

environments.

The following recommendations aim to assist nurses in recognizing indicators that a patient may

be approaching the end of life or experiencing changes in their condition, including deterioration,

stability, or temporary improvement (Molina-Mula and Gallo-Estrada, 2020; Anton et al., 2021).

Acknowledging the certainty of someone's impending death is not always straightforward. To

determine the level of prognostic certainty and address any uncertainty, these guidelines act as a

supplement to individual clinical judgment (Centre (UK), 2015).

1. If there is a suspicion that an individual may be entering their final days, gather and

document the following information:

• The person's physiological, psychological, social, and spiritual needs.

• Current clinical signs and symptoms.

• Medical history and clinical context, including underlying diagnoses.

• The person's goals and wishes.

• Input from significant individuals regarding future care.

2. Assess for changes in signs, symptoms, and reported investigation results that may

suggest the person is nearing the end of life, including:

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 • Signs such as agitation, Cheyne-Stokes breathing, deterioration in consciousness level,

mottled skin, noisy respiratory secretions, and progressive weight loss.

• Symptoms such as increasing fatigue and loss of appetite.

• Functional observations such as changes in communication, declining mobility or

performance status, or social withdrawal.

3. Be mindful that improvement in signs, symptoms, or functional observations may

indicate stability or recovery.

4. Unless clinically necessary, avoid conducting investigations that are unlikely to impact

care in the final days of life. For instance, performing a blood count may guide platelet

transfusion to prevent severe bleeding.

5. Utilize the information gathered from assessments, multiprofessional team collaboration,

the individual, and their significant others to aid in determining whether the person is

nearing death, deteriorating, stable, or improving.

6. Monitor the person for further changes at least every 24 hours and update their care plan

accordingly.

7. When faced with a high level of uncertainty, such as ambiguous or conflicting clinical

signs or symptoms, seek advice from colleagues who have more experience in providing

end-of-life care. This applies to situations where it is unclear whether the person is

entering their final days, stabilizing, or potentially experiencing temporary recovery.

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Communication and legal and ethical decision-making

It is recommended to refer to the communication guidelines within healthcare services. Nurses

providing care to adults nearing the end of life should consider the individual's current cognitive

ability to communicate and actively engage in decisions regarding their end-of-life care. For

further details, please consult NICE's information on making decisions about personal care,

accessible in PDF format in Week 7 additional material section. As a qualified nurse you should:

1. Assess and address the communication needs and expectations of individuals

approaching the end of life, considering the following factors:

• Their desire to have a significant person involved in decision-making for their care.

• Their level of understanding regarding their proximity to death.

• Their cognitive status and any specific speech, language, or communication

requirements.

• Their preferences regarding the amount of information they wish to receive about their

prognosis.

• Any cultural, religious, social, or spiritual needs or preferences they may have.

2. Determine the most suitable member of the multiprofessional team to discuss the

prognosis of the dying person, based on the professional's:

• Competence and confidence in delivering such information.

• Existing rapport and relationship with the individual.

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 3. Engage in a conversation about the dying person's prognosis with them, unless they

explicitly express a wish not to be informed. Initiate this discussion promptly upon

recognizing that they may be in the final days of life, and involve significant individuals

as desired by the dying person.

4. Provide the dying person, along with those significant to them, with the following:

• Accurate information regarding their prognosis, unless they prefer not to receive it. This

should include explanations of any uncertainties and how such uncertainties will be

managed, while avoiding false optimism.

• Opportunities to openly discuss fears, anxieties, and inquiries related to their care during

the last days of life.

• Information on how to contact members of their care team.

• Availability of further discussions with a member of their care team.

5. Explore with the dying person and their significant individuals:

• The existence of an advance statement or expressed preferences regarding their care

during the last days of life. This includes considerations such as anticipatory prescribing

decisions, advance decisions to refuse treatment, or details of any legally appointed

lasting power of attorney for health and welfare.

• Their comprehension and ability to retain the information provided about their prognosis.

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 6. Engage in discussions regarding the prognosis of the dying individual with other

members of the multiprofessional care team, and ensure that these conversations are

accurately documented in the dying person's care record.

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References

Abu-Odah, H., Molassiotis, A. and Liu, J. (2020) ‘Challenges on the provision of palliative care
for patients with cancer in low- and middle-income countries: a systematic review of reviews’,
BMC Palliative Care, 19(1), p. 55. Available at: https://doi.org/10.1186/s12904-020-00558-5.

Akdeniz, M., Yardımcı, B. and Kavukcu, E. (2021) ‘Ethical considerations at the end-of-life
care’, SAGE Open Medicine, 9, p. 205031212110009. Available at:
https://doi.org/10.1177/20503121211000918.

Anton, N. et al. (2021) ‘Identifying factors that nurses consider in the decision-making process
related to patient care during the COVID-19 pandemic’, PLoS ONE, 16(7), p. e0254077.
Available at: https://doi.org/10.1371/journal.pone.0254077.

Biradar, S. (2015) ‘End-of-life care policy: An integrated care plan for the dying’, Indian
Journal of Critical Care Medicine, 19(4), pp. 240–240. Available at:
https://doi.org/10.4103/0972-5229.154580.

Boykin, A., Schoenhofer, S.O. and Valentine, K.L. (2014) Health care system transformation for
nursing and health care leaders: implementing a culture of caring. New York, NY: Springer
Publishing Company, LLC.

Centre (UK), N.C.G. (2015) ‘Recognising when a person may be in the last days of life’, in Care
of Dying Adults in the Last Days of Life. National Institute for Health and Care Excellence
(NICE). Available at: https://www.ncbi.nlm.nih.gov/books/NBK356012/ (Accessed: 24 May
2023).

Chu, C., White, N. and Stone, P. (2019) ‘Prognostication in palliative care’, Clinical Medicine,
19(4), pp. 306–310. Available at: https://doi.org/10.7861/clinmedicine.19-4-306.

Demirsoy, N. (2017) ‘Holistic Care Philosophy for Patient‐Centered Approaches and

Spirituality’, in Patient Centered Medicine. IntechOpen. Available at:
https://doi.org/10.5772/66165.

Donnelly, S. et al. (2018) ‘Voices that matter: end-of-life care in two acute hospitals from the
perspective of bereaved relatives’, BMC Palliative Care, 17(1), p. 117. Available at:
https://doi.org/10.1186/s12904-018-0365-6.

Dzierżanowski, T. (2021) ‘Definitions of palliative care – narrative review and new proposal’,
Palliative Medicine, 13(4), pp. 187–200. Available at: https://doi.org/10.5114/pm.2021.114495.

Hagan, T.L. et al. (2018) ‘Nursing’s role in leading palliative care: A call to action’, Nurse
Education Today, 61, pp. 216–219. Available at: https://doi.org/10.1016/j.nedt.2017.11.037.

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Hassankhani, H. et al. (2020) ‘Palliative Care Models for Cancer Patients: Learning for Planning
in Nursing (Review)’, Journal of Cancer Education, 35(1), pp. 3–13. Available at:
https://doi.org/10.1007/s13187-019-01532-3.

Jasemi, M. et al. (2015) ‘Effective factors in providing holistic care: A qualitative study’, Indian
Journal of Palliative Care, 21(2), p. 214. Available at: https://doi.org/10.4103/0973-
1075.156506.

Klapwijk, M.S. et al. (2020) ‘Experiences with the Liverpool care pathway for the dying patient
in nursing home residents: a mixed-method study to assess physicians’ and nurse practitioners’
perceptions’, BMC Palliative Care, 19(1), p. 183. Available at: https://doi.org/10.1186/s12904-
020-00686-y.

Kwame, A. and Petrucka, P.M. (2021) ‘A literature-based study of patient-centered care and
communication in nurse-patient interactions: barriers, facilitators, and the way forward’, BMC
Nursing, 20(1), p. 158. Available at: https://doi.org/10.1186/s12912-021-00684-2.

Mengual, T.E. et al. (2023) ‘Knowledge about Palliative Care and Attitudes toward Care of the
Dying among Primary Care Nurses in Spain’, Healthcare, 11(7), p. 1018. Available at:
https://doi.org/10.3390/healthcare11071018.

Meyer, A.C. (2022) Trends in population health in an era of increasing longevity. Institutet för
miljömedicin / Institute of Environmental Medicine. Available at:
http://openarchive.ki.se/xmlui/handle/10616/47854 (Accessed: 17 May 2023).

Molina-Mula, J. and Gallo-Estrada, J. (2020) ‘Impact of Nurse-Patient Relationship on Quality

of Care and Patient Autonomy in Decision-Making’, International Journal of Environmental
Research and Public Health, 17(3), p. 835. Available at: https://doi.org/10.3390/ijerph17030835.

Motamedi, M. et al. (2021) ‘Concerns and potential improvements in end-of-life care from the
perspectives of older patients and informal caregivers: a scoping review’, BMC Geriatrics, 21(1),
p. 729. Available at: https://doi.org/10.1186/s12877-021-02680-2.

Sleeman, K.E. and Collis, E. (2013) ‘Caring for a dying patient in hospital’, BMJ, 346(apr17 1),
pp. f2174–f2174. Available at: https://doi.org/10.1136/bmj.f2174.

Wichmann, A.B. et al. (2018) ‘Advance care planning conversations with palliative patients:
looking through the GP’s eyes’, BMC Family Practice, 19(1), p. 184. Available at:
https://doi.org/10.1186/s12875-018-0868-5.

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