Chapter 17 Palliative Care and Health Breakdown

Amanda Johnson, Kathleen Harrison, David Currow, Megan Luhr-Taylor, Robert Johnson

When you have completed this chapter you will be able to

• Understand the core components of a palliative care approach and their application to an individual and family;

• Identify the cluster of symptoms commonly experienced by an individual requiring palliation;

• Understand the pathophysiology underpinning the cluster of common symptoms;

• Assess an individual for the presence of the common symptoms;

• Select the appropriate interventions inclusive of pharmacology to be implemented following identification of the common symptoms; and

• Develop foundation knowledge and generic skills in palliative care to assist in the support of an individual and their family receiving palliation.

INTRODUCTION

This chapter is designed to provide undergraduate nursing students and nursing professionals with an understanding of the cluster of symptoms and the existence of a terminal pathway most commonly shared by individuals who are dying, irrespective of the underlying pathophysiology. Case studies are used to illustrate that the manifestation of symptoms and the presence of the terminal pathway are not exclusive to any one particular disease entity but can be derived from cancer, neurological, cardiac, respiratory, renal and/or age-related chronic illnesses, such as dementia.

The case studies aim to enhance the capacity of a beginning nurse to provide effective nursing care embracing a palliative care approach. This approach is based on the premise of early assessment, intervention and management to improve the individual and their family’s quality of life. The two primary needs expressed by individuals dying and their families are

1. The desire to be comfortable and free from symptoms, allowing them to have ongoing interaction with family and friends; and

2. Maintaining a quality of life in which they can achieve meaningful goals.¹^,²

REFLECTIVE EXERCISE

1. What aspects does a nurse find most challenging when providing nursing care to an individual, who is dying, and their family?

2. Why are these aspects challenging to a nurse?

DEMOGRAPHICS OF DEATH IN AUSTRALIA

Australia’s life expectancy in the 21st century has significantly improved for both genders, with the exception of Indigenous Australians ³^,⁴. With advancements in medicine and public health (food, water and sanitation), the opportunity to live longer is created, resulting in an increasingly aged population⁵. The main causes of death in our adult population are related to malignancy and circulatory disorders (acute myocardial infarction, cerebrovascular accidents).⁶ This leads to an increased incidence of chronic illness in our aged population that will see more people dying from diseases that are chronic, and with multiple pathologies present³^,⁴^,⁶^,⁷, than ever before.

An increased life expectancy brings innate gains for individuals, but nationally, this situation provides a significant challenge for government to provide a comprehensive health care system responsive to the needs of our ageing population.

WHY IS THERE A NEED FOR A PALLIATIVE CARE APPROACH?

Worldwide, the incidence and mortality from cancer and chronic disease is expected to increase significantly over the next 20 years ⁸^–¹⁰, creating more demand for palliative care than ever before⁵. Cognisant of this changing health pattern, the World Health Organization (WHO) now defines palliative care as

an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual ⁹ (p. 84).

The WHO definition reflects the shifting of palliative care and explicitly identifies that the approach can now begin at the time of diagnosis or at any other point along the illness trajectory, and may be implemented in a range of health care settings ¹⁰.

THE CHALLENGE FOR NURSES

The nature of the death experience now faced by nurses is significantly shaped by the changing demographics of disease morbidity and mortality, and the increasing age of the Australian population. Nurses will be caring for individuals who will commonly have more than one disease state and/or disability present at the time of death ³^,⁴. This co-morbidity of disease results in increased acuity and complexity in the management of symptoms, thus placing additional demands on the nurse’s knowledge and skill mix. The need for nurses to develop a palliative approach inclusive of core knowledge and generic skills, and to transfer this knowledge and skill across acute, community and residential aged care facilities, is paramount⁶. Ensuring nurses have this capacity will enable individuals and their families to be better managed during their chronic illness and palliation.

A sound knowledge base of the underlying disease pathophysiology, an understanding of the cluster of common symptoms experienced by the individual, and the capacity to undertake a nursing assessment to formulate the effective management of these symptoms, are required. The opportunity to normalise this significant life event, and to facilitate meaning and understanding of the experience for the family during and after the individual’s death, is an important contribution for nurses. Having the opportunity to participate in such an experience affords the family a greater chance to engage with their grief in an uncomplicated manner during the individual’s illness and subsequently in their bereavement.

The nurse is central in the provision of symptom assessment and management for individuals and their families requiring palliation ¹¹^–¹⁶. Throughout this chapter, we explore specifically those symptoms most commonly identified as having the potential to compound suffering in individuals who are dying.

THE COMMON CLUSTER OF SYMPTOMS

Individuals who experience a chronic, life-threatening illness where curative and restorative outcomes are no longer viable often share a common cluster of symptoms at the end of their life. Evidence is now emerging acknowledging that individuals dying from chronic illnesses may also experience a similar set of symptoms to those experienced by an individual who is dying from cancer ⁶^,⁸^,¹⁷. The symptoms most commonly identified¹²^,¹⁸ are:

• Fatigue;

• Pain;

• Nausea with or without vomiting;

• Constipation; and

• Dyspnoea.

This list of symptoms is not exhaustive, and you will encounter many other symptoms experienced by individuals in your nursing practice. However, the symptoms listed are representative of those shared by many people who are facing a life-limiting illness, regardless of the underlying disease, and which may be present in varying degrees. These symptoms have the greatest potential to adversely affect an individual and their family’s quality of life if not treated effectively. An understanding of the symptoms, their cause and the ongoing management will provide you with the skills to intervene appropriately to promote comfort and a quality of life for the individual and their family.

The use of pharmacology in conjunction with non-pharmacological interventions can prove to be invaluable to the individual requiring palliation. Combined, these interventions may promote an improved quality of life for not only the individual experiencing the symptom but also for the family. The important issue to remember here when implementing non-pharmacological interventions is to review their efficacy and interactions with the prescribed medications through discussion with the individual’s medical specialist and/or pharmacist ⁵^,¹⁹^,²⁰.

Three case studies are introduced below which examine a variety of symptoms and their related initial management. The case studies are then re-introduced after further discussion of the above symptoms.

Case study one

Kathy Anderson, 45, presented to the community health services via a referral for assistance with symptom management. Her symptoms were dull constant pain in her lower back and right rib area, decreased mobility, spasmodic slight nausea, decreased bowel elimination and decreased appetite.

Kathy had recently been diagnosed with breast cancer and bony metastases (right 5th rib/right hip). Kathy had been seen at the local cancer centre and had completed four cycles of chemotherapy, with no further plans for treatment. She agreed with the stated symptom management issues, but it was noted that she appeared breathless on minimal exertion.

Case study two

Jane Cartwright, 52, had frequent admissions to the local teaching hospital over the past four years. She then presented with an exacerbation of her chronic obstructive pulmonary disease.

When the nurse attended her, Jane was propped up in a recliner presenting with severe dyspnoea and oxygen therapy in situ via nasal prongs. Jane stated that she had had a constant dull pain in her chest, which worsened when she got periods of increased breathlessness. She also stated that she could not eat much, and that going to the toilet was a real problem.You noted that she also had blue discolouring in her upper and lower extremities, as well as swelling in her lower extremities.

Case study three

Antonio Renaldi, 78, migrated to Australia from Italy in 1955. Antonio worked as a market gardener since his arrival on a one-hectare site near a busy city road. His property had recently been subdivided, and Antonio had been experiencing moderate to severe short-term memory loss. Most recently, Antonio had experienced depression, early waking, and social withdrawal from his family. Following psychogeriatric assessment, including a Mini Mental Assessment (score 22/30) and a CT brain scan, he was diagnosed with Alzheimer’s disease.

Antonio and his wife were visited by a community nurse, after he was referred following a fall. He had a long history of rheumatoid arthritis affecting his ankles and knees. The fall had left him with severe bruising to the left side of his body and face. He sustained a fractured right wrist and was unable to shower himself. The nurse assisted with showering and assessed his pain requirements.

LEARNING EXERCISES

1. Examine the three case studies and identify the symptoms shared by all these individuals.

2. How are these shared symptoms manifested within each of the individuals presented in the case studies?

On review of the case studies, the initial issue that should be apparent to you is that the people, their context and the underlying disease processes are all different. What should also be evident is the sharing of common symptoms between the case studies that are expressed differently as a result of their unique situations.

In case study one, Kathy is relatively young, has cancer and is receiving treatment; her cancer is aggressive and she has metastases. She wants help with her pain, due to the debilitating effect of the pain and her metastases – the reduction in her mobility, her nausea, her decreased bowel activity and her poor appetite. The nurse’s role is to assess each of these areas, and to create a plan of care that is acceptable to, and can be managed by, Kathy and her carers.

In case study two, Jane’s disease process is chronic obstructive pulmonary disease. Her key symptoms are dyspnoea, pain and constipation. The chronic nature of this disease means that Jane has suffered for a period of time and is likely to continue to suffer. The nurse’s role is to ease or minimise that suffering, and give Jane a plan of care so that she can obtain assistance when she requires it. As in Kathy’s case, education about her symptoms, their cause and their management will be an essential element of the care being provided by the nurse.

In case study three, Antonio’s disease process is different again; however, he too will be treated using a palliative approach because his condition is incurable and has complex needs. Antonio is experiencing pain but no longer understands why. The nurse’s aim is to provide interventions that will maintain his level of function and provide his wife and carers with the means to manage his behaviour and symptoms.

CLUSTER OF SYMPTOMS

FATIGUE

Fatigue is the first symptom that is the most frequently encountered symptom individual’s and their families who experience a chronic illness and or who are dying experience, regardless of the underlying cause ²¹^–²². No one agreed definition exists for fatigue, but it is generally accepted that it is a subjective feeling of easy tiring, reduced capacity to perform activities, generalised weakness; impaired cognitive function; and emotional lability²²^–²⁵. Fatigue may also be referred to as asthenia.

In the majority of individuals experiencing a chronic or end-stage illness, fatigue will be experienced, particularly towards the terminal stages. The underlying mechanisms of why fatigue develops in these individuals are not widely understood ²², but it is known that the impact of fatigue is significant on the individual’s well-being, relationships with others, and their ability to perform cognitive and physical tasks²¹^,²³. Several contributing causes have been identified:

• The underlying disease;

• Treatment modalities;

• Stress and the effect on the central nervous system;

• Personal characteristics;

• Environmental factors;

• Psychological, for example, depression, anxiety, boredom ⁵^,²¹^,²³^,²⁵.

Fatigue is both multifactorial and multidimensional, and the individual’s experience of the symptom is shaped by the degree to which biological, psychological, social and personal factors impact and affect the individual ¹⁸. Several theories have been proposed to explain the underlying pathophysiology of this symptom²¹:

1. Accumulation theory suggests that fatigue is related to the accumulation of muscle metabolites that interfere with normal cellular function;

2. Depletion theory, where the individual experiences a significant loss of red blood cells leading to a reduction in their oxygen-carrying capacity and hypoxaemia;

3. Central nervous system model demonstrates the interface of more than one mechanism where a reduction in intracellular calcium in the peripheral nervous system has an impact on the central nervous system and subsequent muscular performance;

4. De-conditioning effect, where patients reduce their activity levels when they become ill which has a biochemical, physiological and behavioural effect on their perception of fatigue; and

5. Tumour effect, where lipolytic and proteolytic factors are produced by the tumour’s cell membrane and cause disruption to the host’s metabolic functions ⁵^,²¹^,²²^,²⁴^,²⁵.

The complex and multidimensional nature of this symptom requires a comprehensive physical and mental health assessment to identify potential strategies to support the individual. Nurses have a responsibility, as with all other symptoms requiring palliation, to consider a variety of approaches for implementation and to undertake a holistic evaluation of their effectiveness ²³. Adoption of this approach into the nurse’s practice has the potential to improve the symptom for the individual.

The use of medications to manage this symptom is often viewed as being limited, although the following have some beneficial effects: corticosteroids, megestrol acetate, and methylphenidate ²¹^,²²^,²³.

More commonly, it is the non-pharmacological interventions that are more frequently used as first line management, for example, balancing activity and rest, counselling, adaptation of physical activities, changing medications, education, promotion of sleep, controlling other symptoms ²¹^,²²^,²⁴.

As the end of life nears, increasing fatigue and drowsiness signal a natural decline towards death. It is at this time that no active fatigue management strategies are instituted but rather, the individual and their family are supported holistically by the nurse ²¹.

PAIN

Pain is consistently ranked highly in studies by individuals and their families as the symptom they most fear and find distressing ⁵^,²⁶^,²⁷. Pain reportedly occurs in 75% of individuals with cancer and 65% of individuals dying from other causes²⁸, and yet, relief of pain and suffering can be achieved for most individuals who are dying²⁶. The palliation of pain is achieved through accurate and continuous assessment undertaken by health professionals initially on presentation, regularly throughout the course of treatment, when changes in the individual’s pain state occurs and by acting as the individual’s advocate²⁷^,²⁹.

Collectively, the following two definitions convey the multidimensional nature of pain and therefore, the complexity in managing this symptom. Pain is ‘an unpleasant sensory and emotional experience associated with actual and potential tissue damage, or described in terms of such damage’³⁰(p. 249). Importantly, ‘pain is whatever the person says it is, and existing whenever the person says it does’³¹(p. 95). The two definitions show how an individual has the capacity to express the impact of their pain in a number of ways: psychologically, behaviourally, psychosocially and/or spiritually²⁷. In particular, the second definition highlights that the symptom of pain is a highly personal and subjective experience for the individual.

Pain arises for individuals who are dying from three sources:

1. As a direct consequence of the disease process, for example, infiltration of the malignancy to surrounding tissues, or following a myocardial infarction;

2. By the treatment which is undertaken, for example, chemotherapy, radiotherapy, surgery that subsequently causes injury to the surrounding nervous, muscle and visceral tissues ³²; and

3. As a consequence of concurrent problems worsening as the body changes, for example, chronic lower back pain worsened by deconditioning, ischaemic heart disease ⁵.

For some individuals, their pain may occur as a combination of all three sources, making their pain management a more complex entity.

Pain can be classified in several different ways. A brief review of the main categories of pain (acute, chronic) are described below, along with the three main physiological types (somatic, visceral and neuropathic)⁵^,²⁸^,³². Some examples accompany the description and are related to individuals receiving palliation. A more detailed examination of pain theory and pathophysiology can be obtained from the recommended reading, listed at the conclusion of the chapter.

Acute pain is the result of recurrent or progressive tissue damage or inflammation, which serves to warn the individual of the injury and is usually a time-limited experience ³²^,³³. Pain of this nature has a rapid onset and is usually self-limiting once treatment is initiated, with a predictable outcome ⁵. Acute pain produces the following signs reflecting a sympathetic nervous system response: tachycardia, tachypnoea, hypertension, sweating, pupillary dilatation and pallor⁵^,²⁸.

By contrast, chronic pain results from a chronic pathological process and from repetitive stimulation of the central nervous system ²⁸. Chronic pain has an ill-defined onset, with the individual appearing withdrawn and depressed⁵. This type of pain continues to occur and may increase in its intensity, becoming more severe over time⁵.

Somatic pain occurs as a result of the activation of nociceptors in cutaneous and deep musculoskeletal tissues that are stimulated by physical factors such as heat, pressure, distension, or chemical reactions such as injury and inflammatory processes ³². This pain is often described as a constant, gnawing or aching sensation felt superficially and is mostly localised in its origin⁵^,²⁷^,²⁸. Examples may include bone metastases, soft tissue inflammation.

Visceral pain results from the infiltration, compression, distension, or stretching of the thoracic and abdominal viscera, and is often accompanied by other symptoms, such as nausea, vomiting and sweating ³². This pain is often described as cramping, wavelike, deep, squeezing or pressure, and is often referred to cutaneous sites remote from the existing lesion⁵^,²⁷^,²⁸^,³². An example may include liver metastases causing liver capsule distension resulting in referred shoulder tip pain.

Neuropathic pain is a consequence of an injury sustained to the peripheral and/or central nervous systems, where nerve impulses fail to be transmitted and alternate pathways established are painful ³². The pain is often described as a numb, radiating, burning sensation, shock-like or electric⁵^,²⁷^,²⁸. Examples may include radiation-induced brachial plexopathy, spinal cord compression, cisplatin neuropathy. These descriptions support the nurse’s assessment of how the pain is being felt by the individual, and allow for an accurate determination by the nurse of the type of pain the individual is experiencing (somatic, visceral, neuropathic) and therefore assist in the selection of the most appropriate treatment strategies for the individual.

New pain in an individual dying must be investigated thoroughly, as it may be the sign of infection, fracture, or a neurological problem that may be reversible ³³.

The primary issue for individuals who are dying is that they are fearful of their pain and the potential impact the pain relief may have on their capacity to engage in normal activities of daily living. Unrelieved pain significantly impacts on all aspects of their quality of life and well-being – their physical, psychological, social and spiritual dimensions ²⁷^,³⁴. Unresolved pain becomes in itself a disease entity with physical changes occurring to the nervous system and leading to the exacerbation of the individual’s suffering. Furthermore, if pain is not controlled, disruption to the individual’s capacity to engage holistically within their social context potentiates the development of dysfunctional relationships³⁵^,³⁶.

For this reason, the nurse has a responsibility to undertake a systematic and comprehensive pain assessment to evaluate the pain needs of the individual, the effect of their responses on their family and to provide advocacy in this process ³³. This is achieved through: collection of the person’s history; undertaking a physical assessment; utilising a pain scale; determining the level of interference to ‘normal’ function; a description of the pain and its location; an assessment of how their pain feels over a period of time; identification of any behavioural factors affecting their pain and social interaction capacity; determining the effect of pain on their mood, sleep, capacity to cope, goals and finances; and assessing the ongoing impact the suffering has had on their spirituality ²⁷^,³³.

Underpinning the pain management of individuals who are dying is the need for a comprehensive pain assessment that embraces The World Health Organization principles of: by the ladder; by the clock and by mouth³⁷. The principle of by the ladder refers to a graduated step approach to the use of pharmacology, commencing with milder agents in the beginning and leading to the use of opioids when stronger pain is evident. In addition, adjuvant analgesics and non-opioids are used collectively along each step. Adjuvant analgesics are widely used in palliation and have the capacity to

1. Have an independent analgesic effect; or

2. Work synergistically with other agents to enhance comfort; or

3. Relieve other symptoms associated with pain, for example, anxiety ²⁷.

See examples of adjuvant analgesics in Table 17.1. The by the clock principle operates on the premise that pharmacology is administered across a 24-hour time span and not according to an ‘as needed basis’. This is particularly significant for palliative care clients; given the incurable nature of their disease, the impetus causing the pain is not able to be removed or reversed. Utilising the by the clock principle results in a constant flow of analgesia for the individual and prevents peaks and troughs. Where possible, it is preferred that pharmacology be administered by mouth as this is the simplest and least invasive route for the individual and in many instances, the most cost effective²⁷.

TABLE 17.1 SUMMARY OF PHARMACOLOGY USED TO MANAGE PAIN ⁵^,²⁸^,²⁹^,³⁸

Type of Pain Pathway	Drug Groups and Examples
Somatic	Non-opioids: paracetamol, ibuprofen, piroxicam, indomethacin, naproxen Opioids: morphine, oxycodone, codeine, fentanyl, methadone, hydromorphone, tramadol
Visceral	Non-Opioids: paracetamol, hyoscine butylbromide Only gold members can continue reading. Log In or Register to continue Share this: Click to share on Twitter (Opens in new window) Click to share on Facebook (Opens in new window) Related Related posts: Health and illness Oncological diseases Female reproductive health breakdown Ageing and health breakdown Stay updated, free articles. Join our Telegram channel Tags: Pathophysiology Applied to Nursing Dec 22, 2016 \| Posted by admin in NURSING \| Comments Off on Palliative care and health breakdown Full access? Get Clinical Tree Get Clinical Tree app for offline access Get Clinical Tree app for offline access

Type of Pain Pathway

Drug Groups and Examples

Somatic

Non-opioids: paracetamol, ibuprofen, piroxicam, indomethacin, naproxen

Opioids: morphine, oxycodone, codeine, fentanyl, methadone, hydromorphone, tramadol

Visceral

Non-Opioids: paracetamol, hyoscine butylbromide

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