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Chapter 3: Holistic Assessment and Care

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Introduction

The assessment of patients is a fundamental skill for nurses working in all clinical settings. In the palliative care setting, assessment is particularly crucial to ensuring the patient's symptoms are effectively managed, and that their progression towards death is as comfortable as possible. This chapter focuses on the skills and knowledge necessary to effectively assess a patient receiving palliative care. It begins with an overview of the differences between standard and palliative assessment, and progresses to a focus on the holistic assessment of patients in the palliative care context. The chapter then presents a framework for the assessment of patients in palliative care which is used widely in the United Kingdom [UK]. Finally, this chapter discusses the common needs and pathophysiological changes of patients at the end-of-life. This chapter will begin to prepare you with the skills and knowledge you require to care effectively for patients in palliative care settings.

Learning objectives for this chapter

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

To describe the difference between standard and palliative assessment.
To explain the concept of holistic assessment and care in the palliative care setting.
To use a standard framework to assess a patient in a palliative care setting.
To describe the common needs and pathophysiological changes at the end-of-life.

Important note

This chapter assumes a basic knowledge of human anatomy and physiology. If you feel you need to revise these concepts, you are encouraged to consult a quality nursing textbook.

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Standard versus palliative assessment

The assessment of patients is a fundamental skill for nurses working in all clinical settings. Typically, assessment progresses through three phases:

Observation of the patient.
Collection of a health history from the patient.
Physical examination of the patient.

Each of these three phases of assessment involves engaging with a patient to collect subjective data [about the patient's self-reported symptoms] and objective data [about the patient's measurable signs]. This data will be used to: [1] identify the patient's needs, [2] inform decisions about the type of care the patient will receive, and [3] monitor the patient's condition as they receive this care, and so to evaluate the effectiveness of this care. In the palliative care setting, assessment has an important fourth purpose: to identify the signs that the patient is progressing towards death, and so to enable the effective management of death. You will study this in greater detail in a later section of this chapter.

The assessment of a patient receiving palliative care also differs from the assessment of a patient receiving standard care because it is holistic in nature. This means that it focuses on understanding the person as a whole being, and on ensuring this understanding is used to identify and implement the best care possible for the individual patient. In addition to focusing on the patient's physical signs, symptoms and issues, as with traditional nursing assessment, in the palliative care context assessment looks at the person more broadly and completely, assessing features such as their psychological [and emotional], sociocultural and spiritual needs. Consider the following case study example:

Example

Huynh is a graduate nurse working in a hospice for patients with cancer. One of her patients is Marianne, a woman who has recently been admitted for care during the final stages of her metastatic breast cancer. In addition to assessing Marianne's physical needs [e.g. pain management, nutrition support, etc.], Huynh also assesses Marianne's:

Psychological [and emotional] needs. Marianne is fearful about death and the dying process. She requires a clinician to explain to her how she will be supported at the end-of-life.
Sociocultural needs. Marianne wishes for her family to be close to her throughout her palliation. She is also interested in connecting with other patients with metastatic breast cancer.
Spiritual wellbeing. Marianne was raised a Catholic, and she expresses interest in re-connecting with her faith and receiving visits from the hospice's chaplain.

Activity

You are encouraged to read the West London Cancer Network's [ND] Guidance Document to Support the Holistic Patient Assessment. This document can be obtained online, by searching for its title.

You will study standard nursing assessment in detail in your undergraduate nursing course. Although the assessment of a patient receiving palliative care progresses through each of the three phases described above, there are a number of key points about which nurses working in palliative care settings should be aware. This unit will focus on the skills and knowledge necessary to effectively assess a patient receiving palliative care.

Holistic assessment

As described in the above section of this unit, nurses working in palliative care settings must assess a patient holistically - that is, assess them completely in order to develop an understanding of them as a whole person. Assessment should consider a person's physical needs - for example, nurses must assess:

The patient's vital signs - that is, their blood pressure [BP], heart rate [HR], temperature [T], respiratory rate [RR] and blood oxygen saturation [SpO2].

The patient's general condition. This can be assessed through measurement of a patient's body mass index [BMI], capacity to perform activities of daily living, skin condition, appetite / energy levels and sleep quality.

Indicators which identify the progression of a patient's specific condition - for example, kidney function in patients with kidney failure.

The nurse should also assess a patient's other needs - for example, their psychological [and emotional], sociocultural and spiritual needs. It is important that nurses working in palliative care settings establish the willingness of a patient [and their family, if appropriate] to discuss psychological [and emotional], sociocultural and spiritual issues, and that they reinforce to them the importance of doing so. It is important to bear in mind:

Psychological [and emotional] needs. As you saw in a previous chapter of this module, patients receiving palliative care can experience a range of psychological issues - including, for example, depression and anxiety - which may be caused by their palliation or comorbid to it. It is important that nurses are able to assess a patient's psychological and emotional needs, using the tools, policies and procedures of the organisation they work for.

Activity

You are encouraged to read the National Institute for Health and Clinical Excellence's [NICE, 2011] Common Mental Health Problems: Identification and Pathways to Care guideline, or the current equivalent. This guideline can be obtained online, by searching for its title.

Sociocultural needs. As the population of the United Kingdom is highly socially and culturally diverse, it is important that nurses working in palliative care settings are able to recognise a patient's sociocultural needs. People from different cultures may have different perceptions, values and beliefs about dying and death; if a nurse is to provide best-practice, culturally-appropriate care, it is essential that these perceptions, values and beliefs are understood and incorporated into the person's plan of care.

It is important to highlight here that the concept of palliative care is foreign to many cultures, and it may be perceived [inaccurately] as 'euthanasia' or 'giving up' on the patient. Helping a person from another culture to understand palliative care, its application and its importance is an essential role for a nurse working in the palliative care setting.

Spiritual needs. Closely related to culture is spirituality - or a person's system of belief and faith, which may be formal [e.g. belonging to a particular religion] or informal. Spirituality is important in assisting many people to understand and cope with dying and death. Spirituality care requirements for people in palliative care may include visits from spiritual leaders [e.g. chaplains, traditional healers or pastoral care workers], spiritual / religious counselling, worship or other similar activities.

It is essential that nurses working in palliative care settings provide a patient [and their family, if appropriate] with opportunities to discuss spiritual and cultural issues in an open and non-judgemental manner. This might include, for example:

Asking the person and their family / carer if they have considered, or would like, access to spiritual or cultural leaders, spiritual / religious counselling, worship or other similar activities in the end-of-life period.

Discussing with the person and their family / carer about the cultural, religious or other rituals they would like to take place at or following the person's death, and ensuring these are recorded in the person's care plan.

Taking the time to listen to the person and their family / carer speak about their feelings and beliefs about culture, spirituality and death, if they wish to do so.

Spiritual and religious issues should be discussed in an open way - that is, whenever the person or their family / carer wish to raise the topic. It is essential that you ensure you are consistently non-judgemental in the way you approach these conversations - that is, you accept the person's feelings and beliefs as valid, and support these to the greatest extent possible. People's perceptions, values and beliefs about dying and death may be very different to your own; however, it is essential that everybody's perceptions, values and beliefs are accepted.

Framework for the assessment of patients in palliative care

At the beginning of this section, it is important to highlight that there are a variety of different frameworks which may be used to assess a patient receiving palliative care; nurses working in palliative care settings should be familiar with the assessment frameworks used in their organisation. One of the most common assessment frameworks is that identified by the mnemonic 'PEPSI COLA':

Topics to Consider	Questions to Ask
P	Physical needs: Symptom assessment. Medication assessment [including side-effects]. Identify and cease non-essential treatments.	What are your main physical problems? How do these problems affect you? What have you tried to manage these problems? Are you taking your medication as prescribed? What other treatments are you using? Are you using any non-prescribed treatments?
E	Emotional needs: Psychological assessment [e.g. depression, anxiety, fears]. Understand patient's expectations of care / death. Coping mechanisms; including attempts to avoid uncomfortable thoughts / feelings. Altered body image. Relationships with others. Disturbed sleep.	Is there something that worries you most? Have you recently lost interest in the things you once enjoyed? [Nurses should have the patient explain these interests, if they are able]. Are you experiencing distress at present? How would you describe this distress? [Nurses may use a tool such as the Distress Thermometer]. How do you normally cope with stress? Have you had difficulty coping in the past? What forms of support do you think you have? Would you like to speak to a professional who can provide emotional support [e.g. a counsellor, etc.]?
P	Personal needs: Sociocultural background and spiritual background, as described earlier in this chapter. Needs related to ethnicity, language, sexuality, etc.	How do you make sense of what is happening to you? What can we do to help with your personal concerns? Would you find it helpful to speak with somebody about these issues [e.g. a support group, patient information service, etc.]? How does your condition affect your ability to meet your personal needs?
S	Social needs: Relationships with others. Welfare rights. Carer assessment.	Ask the following questions as applicable to the individual patient: How are you managing at home? How are you managing at work? How are you managing financially? How are your close personal relationships? Is there anyone who is dependent on you? Do you have any legal concerns or issues?
I	Information and communication needs: What information does the patient have, and need? Is the patient's advance care documentation in order? Does the patient understand their plan of care? Determine patient's wishes for depth of information. Is the mode of communication and language used appropriate?	Have you been asked if you would like to be included in correspondence between members of your multidisciplinary team? Do you know who your key worker is, and how to contact them if needed? [If appropriate]. Do you feel you have been informed of all the relevant information? Is there anything else you would like to know? Do you know how to access further information when you require it? Have you been informed of the patient support groups relevant to you?
C	Control and autonomy needs: Mental capacity to make decisions [as described in an earlier chapter]. Engagement in treatment options and plans. Identification of the patient's preferred place of care. Recap on advance care documentation.	[Nurses may use a standard tool to assess the patient's decision-making capacity]. Have you discussed and documented your wishes for your future care? If yes to the above question, where is this documentation located? Who has access to it? Do you have a hand-held copy of your advance care plan/s or patient records [if you would like one]? If your health deteriorated, where would you like to be cared for?
O	Out-of-hours needs: Identification of appropriate out-of-hours services. Identification of preferred priorities for care. Transfer information, including ambulance services.	Are you [and your family / carer, as appropriate] aware of who you can call for out-of-hours advice and assistance? Do you [and your family / carer, as appropriate] know how to contact services out-of-hours? Do you [and your family / carer, as appropriate] know the transfer services available to you?
L	Living with your illness: Rehabilitation support [to promote quality of life]. Referral to other agencies. End-of-life care planning.	How are you managing with your daily living tasks? How is your appetite, mobility, swallowing, communication, diet, sleep, etc.? Have you been informed of the variety of support services available to you? Have you been given the opportunity to discuss your future, expectations, goals, etc.?
A	After care needs: Funeral arrangements. Family / carer bereavement risk assessment. Future support of the family.	Are there funeral arrangements in place? Do you have information for bereavement services? Are there any additional services your family requires?

[Adapted from West London Cancer Network, ND].

When assessing a patient for palliative care, the UK's Gold Standard Framework [2011] recommends clinicians ask three key questions:

Would you be surprised if the person were to die in the next few months, weeks or days?

Read the following about developing an answer to this question:

Quote

The answer to this question should be an intuitive one, pulling together a range of clinical, co-morbidity, social and other factors that give a whole picture of deterioration. If you would not be surprised, then what measures might be taken to improve the patient's quality of life now and in preparation for possible further decline?

[Royal College of General Practitioners, 2011].

Does the patient show general indicators of deterioration?

There are a number of key general indicators of deterioration which suggest a patient may be suitable for palliative care. These indicators include:

Decreasing activity, with a decline in functional performance [e.g. patient has limited capacity for self-care, is in bed / a chair for >50% of the day, is dependent on others].
The patient has a significant comorbidity and / or unstable, complex, advanced disease.
The patient has a decreasing response to treatments [i.e. decreasing 'reversibility'].
There is limited or no choice of further active treatment for the patient.
The patient has experienced a progressive weight loss [>10%] in the previous six months.
The patient has had a number of unplanned or 'crisis' admissions to hospital.
The patient has experienced a 'sentinel event' [e.g. a fall, transfer to nursing home, etc.].
The patient has a serum albumin level of

Chapter 3: Holistic Assessment and Care

Introduction

Learning objectives for this chapter

Important note

Standard versus palliative assessment

Example

Activity

Holistic assessment

Activity

Framework for the assessment of patients in palliative care

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