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Chapter 3: Holistic Assessment and Care

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.

Standard versus palliative assessment

Typical patient assessment involves engaging with a patient to collect important data. In palliative care, assessment should also identify the signs that the patient is nearing death, and so to enable effective management of death.

The assessment of a patient receiving palliative care is holistic in nature, focusing on understanding the person as a whole being, and ensuring this is used to identify and implement the best care possible. This includes assessing their psychological (and emotional), sociocultural and spiritual needs.

Holistic assessment

Assessment should consider a person's physical needs, including vital signs, general condition, and indicators which identify the progression of conditions.

The nurse should also assess a patient's other needs - for example, their psychological, emotional, sociocultural and spiritual needs. It is important to establish the willingness of a patient (and their family, if appropriate) to discuss these issues. Nurses should consider:

  • Psychological/emotional needs. Patients receiving palliative care can experience a range of psychological issues 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.
  • 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, these perceptions, values and beliefs should be understood and incorporated.

Palliative care is foreign to many cultures, and it may be perceived as 'euthanasia' or 'giving up' on the patient. Explaining palliative care, its application and its importance is an essential role.

  • Spiritual needs. A person's system of belief and faith may be formal or informal. Spirituality is important in assisting many people to understand and cope with dying and death. Spirituality care may include visits from spiritual leaders, spiritual / religious counselling, worship or other similar activities.

Nurses should provide a patient (and their family, if appropriate) with opportunities to discuss spiritual and cultural issues in an open and non-judgemental manner - accepting emotions and beliefs as valid, and supporting these to the greatest extent possible.

Framework for the assessment of patients in palliative care

There are a variety of different frameworks which may be used to assess a patient receiving palliative care; nurses should be familiar with the assessment frameworks used in their organisation. One of the most common is described by the mnemonic 'PEPSI COLA':

Topics to Consider

P

Physical needs:

  • Symptom assessment.
  • Medication assessment (including side-effects). 
  • Identify and cease non-essential treatments.

E

Emotional needs:

  • Psychological assessment (e.g. depression, anxiety, fears). 
  • Understand patient's expectations of care / death.
  • Coping mechanisms.
  • Altered body image.
  • Relationships with others.
  • Disturbed sleep.

P

Personal needs:

  • Sociocultural background and spiritual background.
  • Needs related to ethnicity, language, sexuality, etc.

S

Social needs:

  • Relationships with others.
  • Welfare rights.
  • Carer assessment.

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?

C

Control and autonomy needs:

  • Mental capacity to make decisions.
  • Engagement in treatment options and plans.
  • Identification of the patient's preferred place of care.
  • Recap on advance care documentation.

O

Out-of-hours needs:

  • Identification of appropriate out-of-hours services.
  • Identification of preferred priorities for care.
  • Transfer information, including ambulance services.

L

Living with your illness:

  • Rehabilitation support (to promote quality of life).
  • Referral to other agencies.
  • End-of-life care planning.

A

After care needs:

  • Funeral arrangements.
  • Family / carer bereavement risk assessment.
  • Future support of the family.

When assessing a patient for palliative care, clinicians should ask three questions:

  1. Would you be surprised if the person died in the next few months, weeks or days?
  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
  • Significant comorbidity and / or unstable, complex, advanced disease.
  • Decreasing response to treatments
  • Limited or no choice of further active treatment for the patient.
  • Progressive weight loss (>10%) in the previous six months.
  • Several unplanned or 'crisis' admissions to hospital.
  • The patient has experienced a 'sentinel event'.
  • Serum albumin level is <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; recurrent hospital admissions due to COPD exacerbation in the previous 12 months; severe shortness of breath; 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.
  • General neurological disease: progressive deterioration in physical and / or cognitive function despite optimal therapy; dysphagia-related issues; speech problems.
  • Motor neurone disease / Parkinson's disease / multiple sclerosis: rapid, marked decline in physical status; aspiration pneumonia; increased cognitive difficulties; weight loss; communication difficulties; increased functional dependence; psychiatric problems; 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.
  • Dementia: inability to walk without assistance; development of pressure sores; incontinence; lack of consistently-meaningful conversation; dependence with activities of daily living; weight loss; idiopathic fever; reduced oral intake; aspiration pneumonia.

Needs at the end of life

To plan care effectively, during assessment nurses should identify the actual and potential future needs of a patient receiving palliative care. Every person cared for in the palliative setting will have a variety of different needs, including those related to:

  • The relief of symptoms.
  • Assistance with psychological / mental health needs.
  • 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 and treatments

Pathophysiological changes at the end-of-life

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; in advanced illness, this may result in cachexia.
  • Lack of energy, including profound and persistent fatigue. This is often due to hypermetabolism.
  • 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; 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.
  • The various symptoms of progressive organ failure, including pain, nausea, dyspnoea, constipation, fatigue, etc.

In the terminal phase of life, or the final weeks and days of their life, death is expected. Nurses should be able to identify that the patient is in the terminal phase. There are a number of indicative signs:

  • 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.

These indicators must not replace the individualised assessment of the patient or application of clinical judgement to assessment findings.

A person progresses through a series of key stages during their death. As the body's functions begin to slow, they will demonstrate signs and symptoms such as:

  • Increased fatigue; difficulty waking, progressing into semi-consciousness.
  • Neurological symptoms - confusion or 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.
  • 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.
  • 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 may be 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. They may also develop Cheyne-Stoke breathing; stopping breathing for around five seconds, before re-commencing irregular breathing. Cheyne-Stoke breathing is an indicator of imminent death.

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.
  • Grunting, wheezing, stridor and / or other respiratory sounds.
  • Changes in alertness.

Respiratory difficulties are often accompanied by difficulties with swallowing. Nurses should be able to identify the signs of difficulty swallowing (as patients may struggle to communicate). These signs include:

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

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 (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 others present.

Dealing with death can be challenging, even for experienced nurses. Nurses must ensure they care for their own wellbeing, to ensure they are able to effectively care for the wellbeing of others.

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.


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