Chapter 3: Holistic Assessment and Care

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:

  1. Observation of the patient.
  2. Collection of a health history from the patient.
  3. 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:

  1. 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).

  1. 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 <25g/L of blood.
  1. Does the patient show specific clinical indicators of deterioration of certain conditions?

There are a number of specific clinical indicators of deterioration for different conditions:

  • Cancer: metastases.
  • Chronic obstructive pulmonary disease (COPD): severe disease (with a forced expiratory volume [FEV1] of <30% of predicted levels); recurrent hospital admissions due to COPD exacerbation in the previous 12 months; severe shortness of breath (e.g. after <100m of walking); right-sided heart failure; anorexia; pulmonary infection; >6 weeks of systemic steroids for COPD in preceding 6 months.
  • Heart disease: shortness of breath on minimal exertion; repeated hospital admission.
  • Renal disease: late-stage chronic kidney disease; symptomatic renal failure (e.g. nausea / vomiting, anorexia, pruritus, intractable fluid overload; reduced functional status).
  • General neurological disease: progressive deterioration in physical and / or cognitive function despite optimal therapy; dysphagia leading to recurrent aspiration pneumonia, sepsis, breathlessness and / or respiratory failure; speech problems.
  • Motor neurone disease / Parkinson's disease / multiple sclerosis: rapid, marked decline in physical status (often with medical complications and dyskinesia, mobility problems, falls, etc.); aspiration pneumonia; increased cognitive difficulties; weight loss; communication difficulties; increased functional dependence; psychiatric problems (e.g. anxiety, depression, hallucination, psychosis - particularly with Parkinson's disease); dysphagia; poor nutritional status.
  • Stroke: Persistent vegetative state / minimal conscious state / dense paralysis; medical complications; lack of improvement within 3 months of stroke; cognitive impairment (e.g. post-stroke dementia).
  • Dementia: inability to walk without assistance; development of pressure sores; incontinence (urinary and / or faecal - often with urinary tract infections); lack of consistently-meaningful conversation; dependence with activities of daily living; weight loss; idiopathic fever; reduced oral intake; aspiration pneumonia.

(Adapted from Royal College of General Practitioners, 2011).

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Needs at the end of life

As you saw in the previous section of this unit, nursing assessment is focused on the collection of data to identify a patient's needs, inform decisions about the type of care the patient will receive, and monitor the patient's condition as they receive this care. To plan care effectively, during assessment it is important that nurses working in palliative care settings identify the actual and potential future needs of a patient receiving palliative care. A person's needs will depend on the type of illness they have, its stage and expected progression, their social situation, the location in which they are receiving care, and their preferences for care. Every person cared for in the palliative setting will have a variety of different needs, including those related to:

  • The relief of symptoms (e.g. pain, nausea, dyspnoea, constipation, fatigue, etc.).
  • Assistance with psychological / mental health needs (e.g. anxiety, depression).
  • Access to information, resources, equipment, financial support, psychological support.
  • Support for mobility, self-care and other key activities of daily living.
  • Support with continence, skin integrity, sleep, communication, sexuality and other functions.
  • Support with nutrition, hydration, medication administration and swallowing.
  • Assistance with deciding on, and accessing, place of care.
  • Assistance with deciding on, and accessing, treatments (including complementary therapies).

During your assessment of the patient, it is crucial that you are able to identify their various needs. This understanding will form the basis of decisions about the patient's care.

Pathophysiological changes at the end-of-life

When assessing a person who is receiving, or is to receive, palliative care, it is important that you have some knowledge of the pathophysiological changes associated with a life-limiting illness. There are a number of common pathophysiological changes associated with illness at the end of life:

  • The loss of lean body mass, often due to increased rates of gluconeogenesis (i.e. the creation of energy through the breaking down of protein); in advanced illness, this may result in cachexia (i.e. significant wasting of the muscles and other tissues).
  • Lack of energy, including profound and persistent fatigue. This is often due to hypermetabolism (i.e. an abnormal increase in the body's metabolic activity).
  • Reduction in appetite. This may occur for one of a number of reasons - for example, the loss of the taste sensation, changes in the person's ability to consume and digest food, and social issues related to the consumption of food.
  • An increase in the rate of apoptosis (i.e. programmed cell death); this is common in people with late-stage cancer, organ failure and neurodegenerative disease. 
  • Changes in the immune system, including an increase in inflammatory mediators and a decline in immune function (leaving the patient susceptible to comorbid disease).
  • The various symptoms of progressive organ failure, including pain, nausea, dyspnoea, constipation, fatigue, etc.

All patients at the end-of-life will enter the terminal phase of life, or the final weeks and days of their life, when death is expected. It is important that nurses working in palliative care settings are able to, during their assessment of a patient, identify that the patient is in the terminal phase. There are a number of signs which suggest that a person has entered the terminal phase:

  • The patient requires frequent intervention to manage their signs / symptoms.
  • The patient experiences an irreversible day-to-day deterioration of their condition.
  • The patient becomes unable to leave their bed.
  • The patient's production of urine decreases.
  • The patient loses their appetite; they may have a dry mouth and difficulty swallowing.
  • The patient experiences profound weakness and fatigue.
  • The patient loses weight; in severe cases, they may have cachexia.

Whilst these are important indicators that a patient has entered the terminal phase of life, it is important that these indicators do not replace the individualised assessment of the patient and the application of clinical judgement to assessment findings. For example: just because a patient with a life-limiting illness has lost their appetite does not necessarily mean they are entering the terminal phase of death. Rather, this may be an issue which can be corrected to improve the patient's comfort in the palliative period.

It is important for nurses working in palliative care settings to understand that a person progresses through a series of key stages during their death. As the body's functions begin to slow, a person will experience gradual declines; this will be demonstrated by signs and symptoms such as:

  • Increased fatigue; difficulty waking progressing into semi-consciousness.
  • Other neurological symptoms - such as confusion and disorientation. 
  • Difficulty swallowing; lack of appetite; not wanting to consume food or fluid.
  • Loss of control of bladder and bowel functions (in some cases).
  • Restless movements - this may also indicate that the patient is experiencing pain.
  • Peripheral cooling (i.e. coolness of the hands, feet, arms, legs, etc.).
  • Changes in the rate and depth of breathing.
  • The patient has periods of semi-consciousness.
  • The patient withdraws, detaching from others and their surroundings.
  • The patient may report having vision-like experiences; these are normal and common.

How long this process takes depends on the nature of the person's condition and illness, and the type of care they are receiving. It varies from hours to days.

As the patient approaches death, the following signs may indicate death is imminent:

  • Peripheral circulatory shutdown, cyanosis (a blue tinge to the extremities).
  • Changes in respiration, including 'Cheyne-Stokes' breathing (described following).
  • Drowsiness and reduced cognition, including lack of response to stimuli.
  • Uncharacteristic restlessness or agitation.
  • Increased difficulty swallowing, retained upper airway secretions.
  • Cardiac signs, including hypotension and tachycardia.

Changes in the person's breathing are particularly common at the end-of-life, and these changes may be particularly alarming to witness. A patient's breathing often becomes noisy and irregular. The patient may breathe with their mouth open, and use the accessory muscles of the chest. The person may also develop Cheyne stoke breathing, where they stop breathing for a period of around five seconds before re-commencing irregular breathing. Cheyne stoke breathing is an important indicator of imminent death.

It is important to highlight that many people will experience difficulties with their respiratory function and swallowing during the terminal phase of their illness. Signs of respiratory difficulties include:

  • An increased respiratory rate.
  • Cyanosis, beginning peripherally.
  • Nose-flaring, retraction of the chest and / or accessory muscle use.
  • Tachycardia (increased heart rate).
  • Grunting, wheezing, stridor and / or other respiratory sounds.
  • Changes in alertness.

Respiratory difficulties, as described above, are often accompanied by difficulties with swallowing. It is important for nurses working in palliative care settings to be able to identify the signs that a person may be experiencing difficulties swallowing (particularly if the patient is unable to inform the nurse of the problem). These signs include:

  • Frequent coughing.
  • Saliva leaking from the mouth.
  • Gurgling sounds when breathing.
  • Extra effort to swallow.

It is important for nurses working in palliative care settings to understand that respiratory and swallowing difficulties are a normal and natural aspect of the death process. Respiratory and swallowing difficulties should only be addressed if: (1) they cause the patient significant distress, (2) they may unnaturally hasten the patient's death, (3) the patient's advance planning documentation specifies relevant intervention, and / or (4) a competent patient requests relevant intervention.

As death occurs, nurses will observe:

  • The cooling of the body.
  • Disorientation, including a loss of recognition of loved ones.
  • The use of 'unusual' communication (e.g. the need to say goodbye).
  • Incontinence of both the bowel and the bladder as the muscles relax.
  • Airway secretions, which may result in loud gurgling sounds.
  • A change in breathing patterns, including periods of no breathing.
  • Eyes slightly open, with enlarged and fixed pupils.
  • Relaxing of the jaw muscles, opening of the mouth.

When assessing patients during their death, nurses should:

  • Be as unobtrusive as possible, and avoid all unnecessary interventions.
  • Speak gently and identify themselves before speaking (it is important for nurses to remember that hearing is often the last of the patient's senses to cease functioning).
  • Use gentle touch, and provide the patient with reassurance.
  • Avoid awakening or disturbing the patient.
  • Not judge or be critical of what is occurring; be silent and supportive.
  • Wet the lips / mouth with a small amount of water, ice chips or a sponge-tipped applicator, if the patient requests or if this is documented in their advance care plan.
  • Keep the patient's body clean and dry, if they are incontinent.
  • Ensure the patient is not too warm or too cool.
  • Be a caring and loving presence for the patient's family / carer / significant others.

It is important to highlight here that dealing with death can be challenging, even for the most experienced of nurses. Nurses working in palliative care settings must ensure they care for their own wellbeing, to ensure they are able to effectively care for the wellbeing of others; self-care strategies will be discussed in detail in a later section of this module. It is also important to highlight that dealing with death can be a very rewarding experience. Read the following:

Quote

"Nothing can prepare you for your first death," said Jessica Curtis. The training is helpful but the reality was very different, she said, as she described how the death of a seven week old baby had made a "massive impact" on her career. Spending hours with the baby's family, doing her last offices and taking her patient to the mortuary was a privilege, she said, and this had a direct impact on her decision to write her dissertation on sudden infant death.

(Royal College of Nursing, 2013).

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Conclusion

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.

Reflection

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

-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.

Reference list

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

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

Royal College of General Practitioners. (2011). The GSF Prognostic Indicator Guidance: The National GSF Centre's Guidance for Clinicians to Support Earlier Recognition of Patients Nearing the End of Life. Retrieved from: http://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf

Royal College of Nursing. (2013). Dealing With Death and Trauma. Retrieved from: https://www2.rcn.org.uk/newsevents/congress/2013/agenda/13-dealing-with-death-and-trauma

West London Cancer Network. (ND). Guidance Document to Support Holistic Patient Assessment.  http://www.goldstandardsframework.org.uk/cd-content/uploads/files/Library,%20Tools%20%26%20resources/PepsicolaHPAguidancedocument.pdf

Wilson, J. & Kirshbaum, M. (2011). Effects of patient death on nursing staff: A literature review. British Journal of Nursing, 20(9), 559-563.


Example essay: With reference to the literature, identify and discuss the key legal and ethical issues associated with the provision of palliative care in the UK.

There are a variety of complex legal and ethical issues associated with the provision of palliative care in the United Kingdom (UK). With reference to the literature, this paper identifies and discusses a number of these legal and ethical issues - including informed consent and the right to refuse treatment; the provision, withholding or withdrawal of life-sustaining treatment (including artificial nutrition and hydration); developing and implementing advance care planning documentation; determining a patient's competence and capacity for decision-making; proxy decision-making; and euthanasia This paper aims to demonstrate that the effective management of these key legal and ethical issues by nurses and other health care professionals working in palliative care settings is fundamental to the provision of high-quality palliative care.

The first legal and ethical issue to be considered in this paper is the right to refuse treatment. In the UK, patients must provide consent - or permission - prior to the commencement of any treatment, care or investigation (Department of Health, 2009). However, consent may be refused and / or withdrawn at any time, even if this places the life of the person at risk of death, if (1) the person is capacitous, and (2) the person considered the withholding or withdrawing of treatment, care or investigation to be in their own best interests (Department of Health, 2009). Despite this, research from the UK suggests that many health care professionals working in palliative care settings find a patient's decision to withhold or withdraw treatment, care or investigation to be ethically challenging (Phelps et al., 2014), and also legally complex when the withholding or withdrawal of life-sustaining treatment is confused with euthanasia (as will be discussed in a later section of this paper). It is important that nurses are guided by their organisation's policies and procedures, which are grounded in legal and ethical frameworks, in these situations.

There are particular legal and ethical complexities associated with the provision, withholding or withdrawal of artificial nutrition and hydration at the end-of-life (Matzo & Witt Sherman, 2010). Nutrition and hydration are fundamental life-sustaining treatments, however patients in the terminal stages of life are often unwilling or unable to consume food and fluids. Studies suggest the effects of providing versus withholding or withdrawing nutrition and hydration at the end-of-life are variable, with positive and negative impacts associated with both options: for example, lack of nutrition and hydration may result in death which is more rapid and more uncomfortable, whilst the provision of artificial nutrition and hydration may result in a range of physical and psychological complications (Raijmakers et al., 2010). As described previously in this paper, it is important for nurses working in palliative care settings to remember that the withholding and withdrawal of life-sustaining therapies - including artificial nutrition and hydration - is ethically-appropriate in some circumstances (Holmes, 2010). Again, nurses should be guided by their organisation's policies and procedures, and also by the patient's advance care planning documentation (discussed following).

It must be highlighted that - both generally, and in the palliative care context specifically - the seeking and giving of informed consent for the provision, withdrawal or withholding of treatment and care is "a process" (Shokrollahi, 2010: p. 93). In palliative care settings in particular, a person's preferences for treatment, care or investigation may change over time, as their disease and burden of symptoms progresses (Matzo & Witt Sherman, 2010). This highlights the importance of advance care planning - that is, legally-binding documentation which is used to record the wishes of patients in relation to their palliative care, whilst they are still competent to make these decisions (Faull et al., 2012). Despite the importance of advance care planning, however, research from the UK suggests there are a range of legal and ethical complexities associated with both developing and implementing advance care decisions - particularly in relation to whether overstretched palliative care services can effectively meet patient's wishes for end-of-life care (Robinson et al., 2012). Effective responses to such issues must occur at the level of the health care system and are largely beyond the responsibility of an individual nurse; however, nurses must communicate the limitations of their practice setting - and, subsequently, the limits of the type of palliative care that can be provided - to patients and their significant others.

Both consent for treatment and the development of advance care planning documentation, as described so far in this paper, are underpinned by the ideas of competence and capacity. In order to make decisions relevant to their care, a person must be considered competent and capacitous under the Mental Capacity Act 2005 to do so (Faull et al, 2012). However, determining competency and capacity can be complex, and this is particularly true as the competency and capacity of a patient receiving palliative care may change over time and as their condition progresses (Faull et al, 2012). In determining a patient's competency and capacity, a patient's interdisciplinary health care team must consider whether the patient is able to: (1) understand information relevant to the decision, (2) retain that information, (3) use that information to make a decision, and (4) communicate their decision (Office of the Public Guardian, 2009); however, these are often highly-subjective judgements.

In order for a person to provide - or, indeed, to refuse - to consent to treatment, care or investigation, it is important that their decision is informed; this means a patient must be aware of options, alternatives and expected outcomes, etc. (Jackson et al., 2013). However, research suggests that health care professionals often avoid discussing such complex, emotionally-charged topics with people receiving palliative care - often because they fear a patient may be harmed as a result of open, honest communication, and to spare the patient - and, so, themselves - from the distress associated with such conversations (Faull et al., 2012; Mack & Smith, 2012). One solution to this complexity is to provide honest information, which is necessary in all clinical settings, in an empathetic manner, and one which promotes a sense of hope in a patient receiving palliative care (Back et al., 2009). This type of communication is fundamentally important in the provision of high-quality palliative care.

In many cases, patients receiving palliative care will be unable to make decisions for themselves and, so, will require a proxy decision-maker. A proxy decision-maker is a trusted person who has been provided with the legal authority to make decisions on the patient's behalf. Proxy decision-making raises a bevy of additional legal and ethical issues. Most importantly, proxy decision-makers must be able to make decisions for a patient in a manner consistent with the patient's own values and best interests (Rich, 2002); however, this can be complex if the proxy decision-maker's judgement is affected by the difficult emotions associated with the end-of-life period. Complexities also arise in situations where a proxy decision-maker's choices about a patient's treatment and care conflict with those preferences documented in the patient's advance care plan (Silveira et al., 2010). In such cases, where a solution cannot be reached through negotiation between the proxy decision-maker and the patient's interdisciplinary health care team, external parties - such as ethics committees and legal practitioners - may be used to decide on what is 'best' for the patient.

The final, but by no means the least significant, legal and ethical issue to be explored in this paper is euthanasia, or 'assisted suicide'. Euthanasia is defined as "the act of deliberately ending a person's life to relieve suffering", however euthanasia may also involve encouraging another person to end their life (NHS Choices, 2016: NP). In palliative care settings, it is common for patients - and particularly those with distressing symptoms and / or extreme suffering, such as severe pain or dyspnoea - to request that nurses assist them to die (Matzo & Witt Sherman, 2010). However, under the Suicide Act 1961, euthanasia and assisted suicide, in all their forms, are illegal in the UK (NHS Choices, 2016). This is in itself ethically complex, as the law essentially removes the ability of a patient to decide when and how they die (NHS Choices, 2016). Furthermore, there are complexities associated with whether certain interventions administered in the palliative care context - including sedation to relieve extreme suffering (e.g. the administration of opioids to reduce a dyspnoeic patient's respiratory drive), and the use of 'do not attempt resuscitation' orders, etc. - constitute a type of passive euthanasia (NHS Choices, 2016). Fundamentally, nurses must remember that, as described in an earlier section of this paper, a capacitous does have the right to refuse to consent to treatment or care, even if this will result in their death (Department of Health, 2009). Where nurses comply with a patient's wishes in this context, this is not considered euthanasia.

As evidenced in this paper, there are a variety of complex legal and ethical issues associated with the provision of palliative care in the UK. With reference to the literature, this paper has identified and discussed a number of these legal and ethical issues. This paper has demonstrated that the effective management of these legal and ethical issues by nurses and other health care professionals working in palliative care teams is fundamental to the provision of high-quality palliative care.


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