15. Palliative care
Cathy Payne and Max Watson
LEARNING OBJECTIVES
By the end of this chapter the reader will be able to:
• Describe the holistic principles of palliative care;
• Critically reflect on the ways in which nutritional support in the palliative care setting differs from other settings;
• Explain how patients’ nutritional goals will change with disease progression;
• Recognise the need for appropriate and timely review;
• Discuss and debate the ethical issues surrounding the provision of artificial nutrition and hydration; and
• Critically reflect on the positive ways in which dietitians can help and support patients and their carers receiving palliative care.
Introduction
For many healthcare professionals the word palliative still invokes images of patients nursed in a darkened side room with a syringe driver erected for pain relief and the removal of all active forms of treatment. The term palliative is so synonymous with death and dying for some that they react very negatively to any suggestion that the patients they care for might benefit from the advice and support of palliative care input; ‘It is too early to involve palliative care—we haven’t given up on Mr. Jones yet..’
Since confusion often exists regarding the nature of palliative care, it is important to clearly define the terms used in connection with such care.
Palliative care is defined by the World Health Organisation 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.’1
Thus palliative care is not solely related to care in the last days of life and can be provided in conjunction with active therapy also. It aims to provide comfort and to maximise quality of life. Palliative care should be considered from the point at which patients receive a life-limiting diagnosis.
Generalist palliative care is the care provided most often by the primary care team or by health professionals working within non-palliative specialities. 2 The majority of healthcare professionals working in hospitals, primary care facilities and the community regularly care for patients with palliative care needs, providing generalist palliative care and need to be able to:
• Undertake holistic interdisciplinary assessment of the patient and those who matter to them and effectively communicate treatment goals using an ethical framework to help guide decision-making;
• Use open and sensitive communication with patients and those who matter to them, to facilitate expression of needs including those of diverse cultural groups and those with special needs;
• Recognise the limitations of their own expertise and indications for onward referral to specialist palliative care or other appropriate disciplines and agencies;
• Identify the range of grief responses to appropriately assess and support those dealing with loss and bereavement;
• Participate in education and learning and contribute to audit, evaluation and research improve outcomes for patients;
• Recognise the need for support of self and others, utilising appropriate support systems. 3
Specialist palliative care is the care provided for patients with complex needs relating to their physical, psychological, social and spiritual well being. It is underpinned by interprofessional and transdisciplinary approaches to patient care. 3 This ‘whole person’ or ‘holistic’ care requires a very flexible team approach, as no single profession can possess the skills necessary to address all areas of need. In order to be classified as a specialist palliative care service the professional team must include doctors, nurses, social workers, chaplains, physiotherapists and occupational therapists. Increasingly such teams are not only using the services of pharmacists, dietitians and speech and language therapists, but are including them as core team members.
Hospice and hospice care refer to a philosophy of care rather than a specific building or service and may encompass a programme of care and array of skills deliverable in a wide range of settings. 4 In the USA hospice care is only recognised by insurance companies when a patient is deemed to have a prognosis of less than six months. Within the UK hospice care is provided by both NHS and voluntary sector partners to anyone with advanced progressive illness requiring complex symptom management.
End-of-life care is defined in different ways in the UK and in the USA where it refers to the care of patients around the actual time of death. In the UK it is a much more embracing term including the full range of services required by patients and their families from the point of diagnosis through to bereavement care. In 2007 the UK Government initiated a three-year End-of-Life Care programme aimed at improving the care of all patients, irrespective of diagnosis, coming to the end of their lives. The three key elements of this initiative have been the Liverpool Care Pathway of the Dying, the Gold Standards Framework and the Preferred Place of Care aimed at addressing the following salient issues: 5.6. and 7.
Development of the palliative care speciality
Care of the dying has been important throughout history, though palliative care has only been fairly recently recognised as a medical specialty. The hospice movement was pioneered by Dame Cicely Saunders. 12 During her career Saunders trained and practiced as a nurse, social worker, doctor and researcher. She strongly believed that death was a process that should not be feared and should be both life-affirming and free of pain.
You matter because you are you. You matter to the last moment of your life. We will do all we can not only to help you die peacefully, but to live until you die. 12
In 1967 she opened the world’s first purpose-built hospice, St Christopher’s in south London. Patient care at St Christopher’s was based on principles of combining expert pain and symptom relief with holistic care to meet the physical, social, psychological and spiritual needs of patients and their family and friends. 13
The palliative care specialty developed with a major focus on the care of patients with cancer. More recently the concept of palliative and end-of-life care has been broadened to include care given to patients with any advanced irreversible disease and not just those with a cancer diagnosis. 11,14 It is estimated that the major causes of death by 2020 will be ischaemic heart disease, cerebrovascular disease and chronic obstructive pulmonary disease. 15 Increases in the number of old frail people with chronic cardiovascular and cerebrovascular disease is a real challenge for health services generally and palliative care services specifically. 16 It is important to recognise that different patterns of service provision may be required to address the needs of patients with non-malignant conditions, where active therapy may continue until death is imminent and where prognostication is uncertain. 17
Over the past 10 years there have been three key documents which have helped to shape therapy services for patients with palliative care needs. These are the King’s Fund report on rehabilitation, ‘Fulfilling Lives’ and the NICE guidelines on improving supportive and palliative care for adults with cancer. 2,18,19 The overarching principles of palliative care are outlined in Box 15.1.
Box 15.1 The overarching principles of palliative care are to:
• Affirm life but regard dying as a normal process;
• Neither hasten nor postpone death;
• Provide relief from pain and other distressing symptoms;
• Integrate the psychological and spiritual aspects of care;
• Offer a support system to help patients live as actively as possible until death; and
• Offer a support system to help patients’ families cope during the patient’s illness and in their own bereavement. 4
Nutritional challenges in the palliative care setting
Dictionary definitions of food focus on its physical attributes of providing macro- and micronutrients to sustain life. However, food has much more of a psychosocial significance than is acknowledged within these definitions. In sitting down to a family meal, people benefit from the act of gathering together socially. Sensory rewards occur from the taste, texture and smell of foods. Food is often presented as a token of affection such as preparing a favourite meal or providing a gift of confectionary.
There are many factors which may influence dietary choices.
Therapeutic diet
Does the patient need a special diet or has information been received from a professional on nutritional needs? Often dietary restrictions can be relaxed at the palliative phase of illness to increase food choice and palatability. Some restrictions are better to be retained as they may increase morbidity if relaxed such as adherence to a gluten-free diet for a patient with coeliac disease.
Religious/cultural needs
Does the patient have food restrictions or preferences associated with religion/culture and can these be better accommodated to improve dietary intake? Provision of Halal meat may significantly increase meal choice for a patient of Muslim faith who would otherwise follow a vegetarian diet within an inpatient setting.
Functional needs
Does the patient have difficulty communicating their food wishes or have they a disability which prevents them from feeding themselves without assistance that could be better managed with the provision of equipment? Use of appropriate seating and feeding aids may increase independence and limit fatigue associated with eating.
Weight change
What is the weight history of the patient and was weight loss deliberate or unintentional? Unintentional weight loss may be an indicator of disease severity and a predictor of poorer prognosis. 20
Food intake
Compared to normal, how is the patient now eating? What was their usual eating pattern and could this be better accommodated within their current place of care to improve dietary intake, e.g. provision of between meal and late evening snacks? Are they now reliant on an artificial feeding route?
Fluid intake
Is there a restriction in fluid volume or consistency and is this still necessary? Fluid restrictions can negatively impact on nutritional intake and physical functioning. 21
Symptoms
Are there symptoms present that could be exacerbating anorexia which are potentially responsive to treatment? Is the patient suffering from anorexia cachexia syndrome?
Psychological issues
What was the person’s previous, and what is their current relationship with food? Were they a healthy eater, a strict adherer to a diet plan, a yo-yo dieter always struggling to control weight, someone who only ate when they were hungry or someone who loved to eat, with food seen as an important element of daily life? Are they facing external pressures to eat which are leading to relationship tensions? Are they depressed? Depression is common within the elderly population and particularly amongst patients with chronic medical conditions. It is important that the impact of depression upon quality of life is recognised and that depressive symptoms are adequately assessed and addressed. 22
Patient goals
What goals does the patient have for nutritional support? Do they wish to maintain, gain or lose weight, do they wish to improve their energy levels, or is their greatest aim to regain enjoyment of food?
Determining energy requirements
Determining the nutritional needs of patients with advanced progressive illness can be a real challenge. Changes in metabolic rate and in the processing of nutrients for energy may mean that predictive equations are unrepresentative of patient need. 23 Particular caution must be taken when using predictive equations to calculate the energy requirements of elderly patients with advanced illness. Changes in body composition including a reduction in fat-free mass will significantly affect energy expenditure and macro- and micronutrient needs. 24 Most of the patients seen by specialist palliative care services will at some stage experience a loss of body weight, a decrease in appetite and a reduction in energy levels.
The syndrome of persistent weight loss in the presence of adequate nutrition as determined by predictive equations is also known as anorexia cachexia syndrome (ACS). 25,26 Weight loss from ACS is not the same as weight loss during starvation. A healthy person’s body can adjust to starvation by slowing down its use of nutrients, but in patients with ACS, the body does not make this adjustment. Therefore weight loss in patients with ACS is unlikely to be reversed simply by eating more or by provision of supplementary artificial feeding. 23,26 The main symptoms of the anorexia cachexia syndrome are outlined in Box 15.2.
Box 15.2 • Severe loss of weight, including loss of fat and muscle mass
• Loss of appetite
• Feeling sick (nausea)
• Feeling full after eating small amounts (early satiety)
• Anaemia (low red blood cell count)
• Weakness and fatigue25
Factors that may contribute to cachexia include both a reduction of nutrient intake and improper nutrient utilisation as well as activation of cytochemical processes which leads to the body moving to a predominantly catabolic state. The main causes of reduced nutrient intake in ACS are outlined in Box 15.3.
Box 15.3 • Physical discomfort from uncontrolled pain, bloating, reflux or nausea;
• Poor appetite or early satiety due to delayed gastric emptying, slowed gastrointestinal transit or ascites;
• Oral problems including a sore or dry mouth, taste changes, infection, poor dentition or ill-fitting dentures;
• Side effects from prescribed or over-the-counter medications;
• Adherence to a therapeutic or altered consistency diet or suffering from food aversions which limit food choice;
• Reliance on others to buy or prepare food or to assist with feeding;
• Depression or anxiety caused by loss of hope, spiritual distress or loss of social status and social contact;
• Breathlessness and fatigue; and
The utilisation of nutrients may be influenced by factors such as the presence of fistulae affecting the gastrointestinal tract, malabsorption of nutrients due to diarrhoea, drug–nutrient interaction or enzyme depletion and muscle atrophy as a consequence of reduced contractile work. 27.28. and 29.
Cancer ACS is often witnessed early in patients with metastatic cancers of the pancreas and lung. Cytokines released by the tumour, or by the immune response mounted against the tumour, lead to activation of metabolic and inflammatory pathways causing disproportionate depletion of lean body mass and a cascade of effects causing weight loss irrespective of food intake. Similar patterns of weight loss are seen in most advanced solid tumours, with organ failure, in progressive neurological disease and in patients with AIDS. 30
Palliative care dietetics is a growing field with increasing need to develop a clear evidence base on which to base practice. Dietitians working with patients who have palliative care needs aim to enhance the quality of life of both patients and their families. This may be achieved by improving nutritional intake, or where this is not possible, by improving the patient and carer’s ability to cope with the patient’s deteriorating nutritional status. 31.32.33.34.35. and 36.
The role of the dietitian
Early identification of those at nutritional risk
Early identification of those at nutritional risk will enable reversible causes of malnutrition to be treated and ensure that dietetic involvement, where needed, is provided in a timely manner. Many of the most difficult to manage end-of-life issues, such as progressive weight loss, have their origins early in the course of a disease. 31 Addressing needs sooner, ensuring patient and carer’s participation in treatment choices, and communicating treatment plans to colleagues may help to improve care in later stages, which may positively impact on the patient’s quality of life. 37
Nutritional screening tools which determine need for nutritional intervention by assigning a point score may fail to capture the subtleties of need within this particularly vulnerable population. Patients may also have a low priority score on a numerical screen but have a treatable nutritional symptom which significantly impacts on their quality of life. Alternatively patients may score highly but may decline the services of a dietitian if they have symptoms causing them greater distress which they wish to have managed first.
Parameters for consideration when undertaking a nutritional assessment are outlined in Box 15.4.
Box 15.4 Nutritional assessment in anorexia cachexia may involve the following:
• Height
• Weight
• Body mass index
• Anthropometry (mid-arm circumference)
• Percentage body weight loss
• Biochemical markers
• Present oral intake
• Consistency of food and fluids tolerated
• Diagnosis and staging of disease
• Comorbidities
• Social circumstances
Anthropometric measurements have been used to measure decline in nutritional status when a patient is unable to be weighed. 38 However, for patients who have lost a significant amount of weight, their loose skin folds can make some anthropometric measurements questionable, such as mid-arm circumference. In an advanced state of muscle wasting with fat depletion, there may be very little change over a period of three months, making it difficult to use this measurement to meaningfully document change in nutritional status. 39 Measurements are subject to observer bias and should be consistently recorded by the same observer to demonstrate decline in muscle and fat mass. 40
Train the healthcare team to ensure consistent dietary advice is provided
Developing a proactive structured training programme on nutrition in palliative care for all staff involved in the provision of palliative care will ensure that accurate and consistent dietary advice is provided to patients and carers. Patients with life-limiting illness are likely to receive care from many professionals throughout their illness. These professionals can come from the acute, community, statutory and/or voluntary sector and may provide services to patients with palliative care needs as a small part of their remit or as the mainstay of their work. It is important that the dietitian works closely with other members of their team to educate and support them in providing appropriate dietary advice to patients and their families, as effective management of symptoms is unlikely to be achieved in the absence of good quality communication between health professionals. 29,41 The role of dietitians in both general and specialist palliative care provision needs to be communicated better to service providers and seen as essential rather than an added extra to service provision. 28,32 A recent review of palliative services for patients with advanced cancer in the West of Scotland showed that many patients who could benefit from dietetic and other Allied Health Professional (AHP) interventions were denied these services. This was because potential referrers had a poor awareness of the role of AHPs and there was poor integration of AHP services into palliative care teams. In addition there were low AHP staffing levels and a lack of palliative care training tailored to suit the needs of specialist and non-specialist AHPs in working with these patients. 42
Communicate appropriate and timely advice
It is important to provide appropriate and timely advice to patients and carers concerning nutritional intervention and symptom control and to also ensure that assessment of nutritional status is ongoing. 43 Communication and regular holistic assessments are the key to forward planning, as needs which are anticipated can be more easily managed. Patients receiving palliative care receive the majority of care during their last year at home and most of that care is provided by informal carers, such as family and friends. Individuals who have the greatest dependency on community palliative care services are also the most dependent on their informal carers. Poor management at home often results in inappropriate admissions to hospital. 44 Educating the patient and their family on nutritional matters enables families to build their coping resources though participation in experiences that enhance control and independence. 45.46. and 47. By actively involving the patient and family we can:
• Improve understanding of treatment goals and enable joint decision making around them;
• Better anticipate needs which can then be more readily met;
• Increase the potential for compliance with the care plan through ownership of it;
• Teach skills and techniques to improve patient functioning; and
This method challenges the traditional therapy approach which tends to rely heavily on technology and biomedical science and so disempowers patients and their families by a focus on their deficits. Traditional therapy undervalues the importance of human interactions in the healthcare experience and tends to be driven by the needs of the healthcare professionals and the system.
Provide supportive information
Information materials should be produced to support patients’ care needs. Medical jargon should be avoided, keeping dietary information as concise and simple as possible and backing it up with written advice where appropriate. It is also important to review the content of written dietary advice, prior to using it with clients or providing it to other healthcare professionals to use.
Ensure appropriate nutritional support
Patients should only receive artificial nutrition support if it is deemed appropriate within their overall palliative treatment. This aims to prevent the inefficient use of resources and protect the patient from inappropriate and demanding interventions. The goal is to ensure that all interventions enhance the patient’s quality of life. Eating is usually an enjoyable pastime but nutrition can become a chore for some patients with advanced disease. Despite the large number of studies that have looked at the prevalence of malnutrition in patients near the end of life there has been very little work focusing on the impact of this symptom on the patient’s quality of life. 51.52. and 53. Poor appetite and weight loss are often seen in advanced disease and may be more distressing for carers than for the person exhibiting these symptoms, as carers often see weight loss as a physical reminder of the deteriorating health of a loved one. 53,54 Provision of food is inextricably linked in society to provision of care and love. When the patient refuses to eat, this can have a devastating effect on relationships within the home. Being unable to partake of food at a family gathering or a group get-together may also leave the patient feeling socially excluded. If patients feel pressurised to eat when they have no desire to do so, this can have a devastating effect on morale and on quality of life. It can also lead to family tension as further weight loss is seen by carers as their failure to provide optimally for their loved one.
Support for carers, friends and family
It is essential to ensure that carers, friends and family are looking after their own nutritional well being. Caring for a dying loved one can be both physically demanding and emotionally exhausting. It is vital that carers do not neglect their own nutritional needs and become ill themselves as a consequence of poor nutritional status. Advice from the dietitian may include:
• Accepting help from others in meal preparation, shopping and cooking;
• Use of Internet shopping to reduce time required to maintain food stocks within the house; and
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