Dame Cicely Saunders philosophy was the basis of truly individualised care at the end of life; focusing on ‘you matter because you are you… help you live until you die’. Since its original conception, hospice palliative care has grown and subsequently developed in many healthcare settings under the umbrella of specialist palliative care (SPC).
A strong emphasis of SPC work is to support and enable generalists to provide holistic care to all patients with palliative care needs regardless of their place of care. Unfortunately reports suggest that there is still work to be done.1-4
The recent Neuberger review has echoed these reports, specifically questioning the use of generic end of life care pathways, recommending the use of individualised care plans as an alternative.5 Such plans are likely to need to include individual priorities and/or goal setting for patients, where appropriate and possible.
Four decades on since the hospice movement began, we are in an ever-changing healthcare system. How do patients currently convey such priorities and goals to healthcare professionals, and how do healthcare professionals elicit these to define individualised plans for patients?
There is little in the literature around what happens for patients with palliative care needs in terms of identifying what patients and healthcare professionals believe to be important, and how these priorities are shared with each other.
As pain is a highly prevalent (and burdensome) symptom in patients with advanced cancer, we performed a study to explore what patients’ and healthcare professionals’ goals were in the management of this symptom. Although this paper only focuses on this single symptom, the findings are important when considering individualised care plans for patients with palliative care needs.
Views about pain
We undertook a qualitative study interviewing 12 patients with pain due to advanced cancer, and 16 healthcare professionals involved in managing this pain (a mix of oncologists, SPC nurses and palliative care physicians) across community, hospice and hospital settings. The aim of the study was to explore how these patients and healthcare professionals describe “controlled” and “uncontrolled” pain, and their goals in the management of pain.6-7
Patients gave a clear insight into what they viewed as important in the management of their pain. They described taking enough analgesics to “take the edge off the pain” or to get “on top of it” so they could “live normally” and be able perform “everyday tasks” such as household chores, hobbies and maintaining relationships with family or friends. These tasks appeared to be important to maintain their identity and role. Perhaps, in the words of Dame Saunders, these activities defined participants to be “who you are” enabling them to “live until they die”.
Other studies have shown that household chores8 and performing valued activities9 are important for this group of patients. Patients viewed the ability to perform these functions and tasks as a sign of whether their pain was acceptable (or not).
Patients highlighted their need for control. They described being reluctant to be dependent on others and conveyed stoical characteristics; they only sought help when their pain resulted in them being unable to do the tasks they wanted to or becoming dependent on their family or friends. Likewise they suggested that they were only willing to take medication when pain was interfering with their everyday tasks or when they were becoming dependent on others. Although they were keen to keep their role and independence, they also “adjusted” or reduced their activities to avoid pain yet conversely they were reluctant for pain to dictate their function. Patients therefore described a “vicious cycle” whereby they took only enough medications to “take the edge off” or “keep a grip” on the pain, and were reluctant to take more medication to become “pain free”; they did not expect this. Their reluctance to take further medication was partly due to fear of side effects, mainly daytime sleepiness. This has previously been described in patients with palliative care needs; a study of 111 patients referred to a palliative care team revealed that 44% of patients took medication less frequently than advised due to a fear of, or experience of, side effects.10 Again, these findings suggested they remained focused on remaining “you” and thus avoided medications which may impair this.
In summary, patients described the ability to perform tasks and functions or maintain a sense of control and independence as important in determining whether their pain was “controlled” or not.
In contrast to patients, healthcare professionals found it difficult to define “controlled” and “uncontrolled pain”. Exploring their priorities in pain management revealed that the majority of participants viewed maintaining patients’ function, and balancing pain relief against side effects as important. For a minority their ultimate goal was to render patients pain free; but they did not share this goal with the patient for fear of letting them down if this proved unachievable. The majority were more circumspect and felt that eliminating pain without causing significant side effects was not possible. They thought achieving some pain relief without intolerable side effects was the best that could be hoped for, particularly in those with ‘difficult’ pain (eg. neuropathic/movement related pain).
The healthcare professionals interviewed felt it was important to manage patients’ expectations regarding pain relief, particularly for those with difficult pain. They saw this as useful in protecting patients from disappointment and in protecting the healthcare professionals from feeling like a failure. Although they alluded to patient-held goals and expectations, they did not appear to routinely elicit patient goals, or even negotiate jointly-set goals with patients. Similarly, the patients reported not communicating their goals to their healthcare professionals. Interestingly, current World Health Organization and British Pain Society guidance on pain control in cancer do not suggest that physicians discuss or document individual goals.11, 12
Making individualised plans for patients
Our findings suggest that patients seemed clear about what they wanted from the management of their pain, which appeared to be congruent with what healthcare professionals were trying to achieve. However, goals for pain management were not discussed routinely and explicitly between patients and their healthcare professionals despite the healthcare professionals discussing the need to modify expectations. This is in contrast to chronic pain settings, where goal setting is a commonly used tool.13 The effectiveness of goal setting as an isolated intervention has not been widely studied, but goal setting and goal review were valued highly by patients taking part in the National Health Service Expert Patient Programme.14 The concept of goal setting is not well evaluated or defined in the palliative care literature.15
Goal setting can be challenging in the palliative care population. Healthcare professionals may feel that patients’ goals are unrealistic or unachievable and there can be a fear of reducing hope. There is evidence to suggest that professionals tend to focus more on problem and symptom based goals, whereas patients choose more functional, practical goals.16 Patient goals may differ from their families’ and professionals’ goals, and of course, this population often have rapidly changing needs and functional ability and so clinical deterioration can impact on goal setting and achievement. However, it has been suggested that one of the ways healthcare professionals can make patients with cancer feel secure is by giving clear clinical goals to aim for.17 Addressing and negotiating such goals are fundamental for patients at the end of life, and may help to give greater understanding of their illness. Identifying goals could allow transparent negotiation of aims for pain management. Mourning the loss of goals, which may be unattainable (eg. a severely debilitated patient wanting to go back to a demanding job) may also be allowed for, a process seen as an important part in upholding hope that is not false.18 Finally, goal setting can assist healthcare professionals in seeing the “whole” patient,19 very much in keeping with the philosophy underpinning palliative care.
Our studies only explored pain, but the messages about individualising the plan of care are likely to be transferable to other symptoms. Individualised care plans could allow for joint exploration of expectations, hopes, priorities and goals thus providing a framework for symptom management and communication. Potentially these care plans could help maintain patients’ identity and role, protect both patients and healthcare professionals from unrealistic expectations, and may be considered as a tool for measuring patient outcomes. As well as being used for symptom control, individualised care plans could be used for the identification and sharing of priorities for all stages of patients’ illness, including end of life care.
As the Neuberger report highlighted, good tools used badly can lead to poor care. In the words of the report we need to “ensure that guidance on care for the dying is properly understood and acted upon, and tick-box exercises are confined to the waste paper basket for ever.”5
Whilst individualised care plans would aim to avoid this tick-box approach, one of the criticisms of the Liverpool Care Pathway was that many elements of it were not evidence-based. Although research in this group of patients is challenging, it is possible;20 any new guidance such as individualised care plans will need to be evaluated to assess whether they do in fact lead to improved care at the end of life such as better symptom control, improved communication with family, or increased identification and achievement of patient wishes such as preferred place of death.
Patients with palliative care needs want to maintain their role and activities that define themselves as them within the limitations of their illness. Our interviews suggest they are able to identify these tasks, activities and roles but don’t share these explicitly with healthcare professionals. Similarly, the healthcare professionals interviewed held goals in managing pain for patients, but didn’t routinely share these goals explicitly with patients. Perhaps the care given to patients with palliative care needs in all settings would be easier to address if we started asking patients about what it is that they want to achieve, do, or be, rather than the focusing on what healthcare professionals think patients want to achieve, do or be. This may be the first step in developing truly indvidualised care for all patients.
Conflict of interest: none declared
1. The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalised patients: the study to understand prognoses and preferences for outcomes and risks of treatment. JAMA 1995; 274: 1591–98
2. Ferrand E, Jabre P, Vincent-Genod C, et al. Circumstances of Death in Hospitalized Patients and Nurses’ Perceptions. Arch Intern Med 2008; 168(8): 867–75
3. Twomey F, McDowell D, Corcoran G. End-of-life care for older patients dying in an acute general hospital - can we do better? Age Aging 2007; 36(4): 462–64
4. Gibbins J, McCoubrie R, Alexander N et al. Diagnosing dying in the acute hospital: are we too late? Clin Med 2009; 4: 116–19
5. Department of Health ‘More care less pathway’. Published July 2013. Available at: https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients accessed Nov 2013
6. Gibbins J, Bhatia R, Forbes K, Reid C. What do patients with advanced incurable cancer want from the management of their pain? A qualitative study. Palliat Med 2013
7. Bhatia R, Gibbins J, Forbes K, Reid C. ‘We all talk about it as if we’re thinking about the same thing’. Healthcare professionals’ goals in managing pain due to advanced cancer: a qualitative study. Under review, Supportive Care in Cancer.
8. Vallerand A, Saunder MM, Anthony M. Perceptions of control over pain by patients with cancer and their caregivers. Pain Management Nursing 2007: 8; 55–63
9. Zelman DC, Smith MY, Hoffman D, et al. Acceptable, Manageable and Tolerable Days: Patient Daily Goals for Medication Management of Persistent Pain. Journal of Pain and Symptom Management 2004; 28: 474–87
10. Zeppetella G. How do terminally ill patients at home take their medication? Palliative Medicine 1999; 13: 469–75
11. WHO, Cancer pain relief. 1986: Geneva: World Health Organisation.
12. Cancer pain. 2010: The British Pain Society.
13. Recommended guidelines for pain management programmes for adults. 2007: The British Pain Society.
14. Abraham C, et al., What psychological and behaviour changes are initiated by ‘expert patient’ training and what training techniques are most helpful? Psychology & Health 2009; 24(10): 1153–65
15. Boa S, et al. Goal setting in palliative care: a structured literature review. BMJ Supportive and Palliative Care 2012; 2 (suppl 1): A9–10
16. Needham PR, Newbury, J. Goal setting as a measure of outcome in palliative care. Palliat Med, 2004; 18 (5): 444–51
17. Brennan J. Cancer in context: a practical guide to supportive care. Oxford: Oxford University Press, 2004.
18. Gum A, Snyder C. Coping with terminal illness: the role of hopeful thinking. Journal of Palliative Medicine 2002; 5(6): 883–94
19. Burns CM, Broom DH, Smith WT, et al. Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process. Supportive Care in Cancer 2007; 15: 187–96
20. Gibbins J, Bloor S, Burcumbe M, et al. Overcoming barriers to recruitment in care of the dying research in hospitals. Journal of Pain and Symptom Control 2013