Fleming, M., Hollins Martin, C., Martin, C.R. (2011). Nutritional intervention and quality of life in palliative care patients. British Journal of Nursing. 20(18): 1168-1173.
Mick Fleming1
Caroline J. Hollins Martin2
Colin R. Martin3
1 Lecturer in Mental Health, School of Health, Nursing and Midwifery,University of the West of Scotland.
2 Senior Lecturer in Womens’ Health, School of Health, Glasgow Caledonian University*
3 Professor in Mental Health, School of Health, Nursing and Midwifery,University of the West of Scotland,
*Address for correspondence: Dr Caroline Hollins Martin, Senior Lecturer in Womens’ Health, School of Health, Glasgow Caledonian University, Cowcaddens Road Glasgow.
G4 OBA. Tel: +44(0)141 273 1482 Email:
Measuring quality of life in palliative care patients receiving nutritional intervention
Abstract
Quality of life measures can be used by health care professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilising, maintaining and attempting to increase weight in palliative care patients has been shown to mediate metabolic and physical wasting effects of the disease process and improvegeneral comfort. A quality of life instrument is a multi-dimensional questionnaire that health care professionals can use to measure domains relating to physical, psychological and social aspects of living and measure health and disease outcomes. There are 3 instruments specifically designed to assessquality of life in patients receiving palliative care. These include: (1) ThePalliative Care Quality of Life Instrument, (2) The Assessment of Quality of life at the End of Life (AQEL), and (3) The Spitzer Quality of Life Index (SQLI). General use quality of life measuresare multifaceted,but for use with palliative carepatients have added dimensions of spirituality, existential issues (purpose & meaning of life), family members’ perceptions of quality of care, symptom control and family support.Use of quality of life scales provide health professionals and organisations with an ideal measure for planning, targeting and evaluating health care interventions.
Key points
- Palliative care treatments are aimed at optimising comfort, reducing side effects of treatments and maintaining the patients’ quality of life.
- Palliative care is differentiated from end of life care, which is more concerned with the final days and hours of a person’s life.
- The metabolic processes associated with specific disease processes can lead to malnutrition and muscle wasting.
- Maintaining patients’weight and nutritional intake whilst receivingpalliative carealleviates some of the metabolic and physical side effects of the disease process.
- Quality of life is aholistic concept that incorporatesphysical, mental, spiritual and psychological realms.
- There are a number of questionnaires that can be used to measurequality of life in people receiving palliative care.
Key words: quality of life, nutrition, palliative care,measurement, assessment
Measuring quality of life in palliative care patients receiving nutritional intervention
There are several factors that may impact on the nutritional status of patients receiving palliative care. These include, knowledge, support, motivation, gender, disease severity and psychosocial dynamics. Weight stabilisation provides patients with the energy required to meet physical, psychological and social functioning needs. Benefits also ensue from providing advice, counselling and support about nutrition during delivery of palliative care. What follows is synopses of salient information health care professionals may find useful to know about nutritional provision during delivery of palliative care.
The significance of providing nutrition topalliative care patients
Palliative care is an approach aimed at improvingquality of life of patients and families facing problems associated with a life threatening illness. Improving quality of life involves prevention and relief of suffering by means of early identification, seamless assessment, treatment of pain and providingphysical, psychosocial and spiritual care (WHO, 2004). Palliative care is requisite when an individual has a life threatening illness, such as chronic heart failure, respiratory disease, neurological disorder or cancer. Palliative care is differentiated from end of life care, which is more concerned with the final days and hours of a person’s life (DoH, 2008; LCP, 2008).
Nutritional support is an important element of palliative care, since inadequate hydration and malnutrition results in muscle wasting, vulnerability to infection and respiratory problems (Kutner et al, 2005). The criteria for nutritional intervention is:
- A body mass index (BMI) of less than 18.5 kg/m2 .
- Unintentional weight loss greater than 10% within the last 3-6 months.
- A BMI of less than 20kg/m2 and unintentional weight loss greater than 5% within the last 3-6 months (NICE, 2006).
An example of a commonly used nutritional screening instrument is the Malnutrition Universal Screening Tool (Todorovic, 2003), which can be used to measure patients individual needs.
Categories of nutritional support
Three strategies can be used by health care professionals to provide palliative care patients with nutritional support:
1.Natural nutritional intake
The aim of this type of intervention is to ensure correct amounts of required nutrients are consumed, digested and metabolised by the patient. A range of prescribed Oral Nutritional Supplements (ONS) may be administered to supplement diet. Mechanical aids can also be used to facilitate chewing, swallowing and digesting of foodstuffs (NICE, 2006).
2.Artificial methods of providing nutrition and hydration
(a)Enteral route: is considered a short term nutritional intervention (4 weeks or less). Nutrition is administered through a nasogastric tube or directly via a percutaneous endoscopic gastromy tube passed through an incision in the abdominal wall into the stomach.
(b)Parenteral route: Nutritional elements that satisfy full energy requirements are delivered through the parenteral route (Intravenously (IV) in the form of Total Parenteral Nutrition (TPN). The amount and type of nutritional mixture is individualised to meet the nutritional deficits and needs of the individual patient. Amino acids, essential fatty acids, vitamins and other nutrients are delivered through a peripheral vein for no more than 14 days (NICE, 2006). Where parenteral feeding is required for longer than 14 days, a central vein is used to deliver nutrients through an IV catheter inserted into the superior vena cava or right atrium of the heart.
(3) Dietary advice/counselling
Dietry advice and counselling should be offered to patients receiving palliative care and their carer’s/relatives. The aim is to encourage positive eating habits, with dietary guidancetailored to meet individualised needs (NICE, 2006).The aim of nutritional support is notcurative, but an integral strategy for maintaining quality of lifewhen a patient has a chronic illness. Effects of malnutrition are uncomfortable, with nutritional support justified on the grounds that it maintains quality of life. Maintaining quality of life is important, as evidenced by Somogyi-Zalud et al (2002) who found that comfort care rather than life sustaining treatments areperceived as preferable by70% of patients aged over 80 with cancer (Somogyi-Zalud et al, 2002).
Quality of life
A number of factors have contributed to quality of life becoming a standard measure of health outcomes. The emergence of person centred health provision has led to a focus on health and well being, as opposed to illness (Pais-Riberio, 2004). Holism and consumerism places the person at the centre of health provision and from this there has been recognition of the multi-dimensional nature of the impact of illness on vital aspects of a person’s life. Quality of life is a multi-dimensional concept that focuses specifically on the impact of health, treatments and illness on a person’s physical, psychological and social functioning (Coons et al, 2000). Definitions of quality of lifevary and are determined by philosophical and theoretical stances. Subjective versus objective are the two dominant theoretical models of quality of life. The subjective model is individualised and places the patients view at the heart of the investigation and uses self-report measures. In contrast, the objective model does not see quality of life as individually determined. Instead it is viewed as an observable measurableexternal phenomena that is shared across populations and is associated with factors such as social contact, housing, role performance, functional ability and income (Oliver, 1996). Subjective and objective views of quality of life stand diametrically opposite one another (Ruggeri et al, 2001).
Assessing quality of life in patients receiving palliative care
A quality of life instrument is a multi-dimensional questionnaire that health care professionals can use to measure domains relating to physical, psychological and social aspects of living and measure health and disease outcomes. The recognised domains of quality of life measured by theEQ-5D (EuroQol Group, 1990) are: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. In contrast, the Medical Outcomes Short Form Health Survey 36(SF-36) (Ware et al, 1993) measures physical functioning, role limitation due to physical problems, bodily pain, general health, vitality, social functioning, role limitation due to emotional problems and mental health.There are alternative quality of life measures,which include the Nottingham Health Profile, the Sickness Impact Profile, the Dartmouth Primary Care Co-operative Intervention Project Charts, the Quality of Well Being Scale and the Health Utilities Index (Coons et al, 2000).
There are 3 instruments specifically designed to assess quality of life in patients receiving palliative care. These include: (1) ThePalliative Care Quality of Life Instrument, (2) The Assessment of Quality of life at the End of Life (AQEL), and (3) The Spitzer Quality of Life Index (SQLI). In addition to the dimensions that comprise the above scales, specific domains that relate to palliative and end of life care are included. These comprise: spirituality, existential issues (purpose & meaning of life), family members perceptions of quality of care, symptom control and family support (Kaasa and Loge, 2003). Three purpose specific quality of lifemeasures have beendesigned for use in patients receiving palliative care.
(1) ThePalliative Care Quality of Life Instrumenthas 28 items andconsists of 6 multi-item scales: 2 functional, 1 symptom, 1 choice of treatment, 1 psychological scale and an overall quality of life scale. The questionnaire takes around 8 minutes to complete and is considered a valid and reliable instrument (Mystakidou et al, 2004).
(2) The Assessment of Quality of life at the End of Life (AQEL)isspecifically designed for use in patients with cancer. It consists of 19 items that measure:physical,psychological, social, existential (ability to do what you want, meaningfulness, ability to feel joy), medical/care and global domains of quality of life. Whilst the measure has shown some validity and reliability, domains within the measure are not supported by factor analysis (Axelsson and Sjoden, 1998).
(3) The Spitzer Quality of Life Index (SQLI)has 5 items and takes on average 1 minute to complete. The instrument measures:activity, daily living, health, support from family/friends and outlook. It has higher than acceptable levels of reliability and good content and convergent validity (Addington-Hall et al, 1990).
Nutrition interventions aimed at improving quality of life
There is an association between weight loss, weight stability and quality of life (Bozzetti et al, 2002). In patients with advanced cancer who have had their nutritional status and weight loss stabilised, there is a resultant increase in length of time of survival and improved scores on quality of life measures (Bozzetti et al, 2002). An association between weight stabilisation, longer survival and improvedquality of life scores in patients with pancreatic cancer has also been found (Davidson et al, 2004).
In addition, N-3 polyunsaturated fatty acid supplements work towards stabilising weight and lead to measured improvements in quality of life (Marin Caro et al, 2007). Benefits from three weeks oral supplementation include, improved immune function and mediation of metabolic effects surrounding tumour growth (Marin Caro et al, 2007). An increase in calorie intake, protein, calcium, iron, zinc, selenium, thiamine, riboflavin and niacin also positively correlate with improvedquality of life (Tian and Chen, 2005). In addition, enteral and parenteral nutrition have been shown to improve nutritional status, increase body composition/mass and measures of quality of life (Bozzetti et al, 2002), specifically inmalnutritioned patients with advanced incurable cancer (Marin Caro, 2007).
Application to other areas of health and disease
Two key findings are applicable to other areas of care. First, nutritional support stabilises and on occasion increases weight. It also provides patients with essential energy to fulfil their physical, social and psychological goals and has a positive effect on quality of life. This application is also relevant to other conditions where there is risk of under nourishment and gastric compromise, e.g., post complex surgery, following an injury and in conditions where there is cognitive malfunction (dementia). Second, uses of quality of life scales provide health professionals and organisations with an ideal measure for planning, targeting and evaluating health care interventions.
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