E-20 Palliative care
Palliation is the reduction of the consequences of a disease, primarily pain and distress, without aiming to remove or treat the cause. Most healthcare involves giving palliative treatments in addition to curative treatments because pain and distress (emotional pain) are part of most patients’ experiences. Some expertise in palliation is essential in all healthcare. Palliation is integral to rehabilitation, but rehabilitation has a broader interest, reacting to all the wider consequences of the disease, such as limitations of activities and social roles. In contrast, palliative care services are traditionally associated with end-of-life care. This reflects their early development in supporting people dying from cancer. People with cancer may have severe pain and marked distress, and initially relieving this was palliative care’s primary purpose. However, many other conditions are associated with pain, discomfort, or distress and will also shorten life, such as chronic heart failure, chronic obstructive pulmonary disease, and multiple sclerosis. Thus, there are no clear boundaries between rehabilitation services, palliative care services, and disease-specific services. Patients should have access to all three, according to the balance of their needs. One of the three should be the lead service, typically the service with the most input. The rehabilitation expert must have good palliative care knowledge and skills and be able to manage people approaching the end of their life.
Table of Contents
The competency
The rehabilitation expert should be “Able to recognise when primary end-of-life and palliative care is the priority and to initiate appropriate treatments.” Within the context of their local healthcare services, they should also know when it is appropriate to consider asking for specialist advice or transferring clinical responsibility to a specialist palliative care service. Further information on the expected behaviours, knowledge, and skills, including some references, can be downloaded.
Introduction
Suffering and death are part of all human life. Healthcare has always tried to alleviate suffering. Palliative care refers to interventions that reduce suffering. Healthcare workers must always consider how to minimise pain, emotional distress, and any other unpleasant consequences of disease or disability.
More recently, healthcare has succeeded in postponing death, sometimes by many years. Ironically, this may be associated with more suffering because treating the cause of an earlier death does not equate to removing the cause of suffering. Moreover, postponing death can also be viewed as prolonging life. This generally can only be justified if the person does not continue to suffer at a high level through the extra time achieved.
People needing rehabilitation typically experience more pain and distress than those without rehabilitation, so that rehabilitation experts will need above-average expertise in palliative care.
Furthermore, many people attending rehabilitation have conditions that shorten their life span, sometimes considerably. The rehabilitation expert should also have expertise in end-of-life care because the patient’s clinical state may change quickly from focusing on rehabilitation to a greater emphasis on end-of-life care. Conversely, some patients seemingly approaching the end of their life can benefit from rehabilitation, which may prolong their life and reduce suffering.
Palliative care and rehabilitation.
In the UK, palliative medicine is now considered part of the Group I specialities, which participate in hospital acute medical on-call service; rehabilitation medicine is in Group II and does not participate in acute medical care. This leads to a different training curriculum.
Palliative Medicine expertise
The characteristics of palliative medicine are illustrated by the seven specific Capabilities in Practice:
- Managing patients with life-limiting conditions across all care settings.
- Ability to manage complex pain in people with life-limiting illnesses across all care settings.
- Demonstrates the ability to manage complex symptoms secondary to life-limiting conditions across all care settings.
- Ability to demonstrate effective advanced communication skills with patients with life-limiting conditions, those close to them and colleagues across all care settings.
- Ability to manage, lead and provide optimal care of the complex dying patient and those close to them across all care settings.
- Manages delivery of holistic psychosocial care of patients and those close to them, including loss and grief; and religious, cultural, and spiritual care across all care settings.
- Demonstrates the ability to lead a palliative care service in any setting, including the third sector.
The curriculum emphasises the need to be holistic nine times, but strangely, there is no mention of the biopsychosocial model of illness. Instead, it refers to the psychosocial aspects of a person’s illness eight times. Thirdly, it sets most capabilities in the context of patients with life-limiting conditions or dying but does not clarify how a life-limiting condition is identified; everyone has a limited life, and most people with a chronic disability will have an actuarially shortened lifespan.
The rehabilitation medicine curriculum mentions palliation nine times, and working experience in a palliative care service is expected during specialist training. The palliative medicine curriculum says rehabilitation five times, and the “experience of working closely with” a specialist rehabilitation service is anticipated as an integral part of specialist training.
Neuro-palliation has become a recognised area of clinical practice, and guidance has been published. Rehabilitative palliative care is also recognised within hospices. Palliation has not been explicitly recognised in other rehabilitation fields. The importance of palliative care across all areas of clinical practice is now acknowledged, for example, for patients with chronic heart failure or respiratory failure.
The following two quotations from the Palliative Medicine curriculum show the degree of overlap.
Palliative care as a speciality focuses on making the most of the time left for living for those undergoing the experiences of death, dying, loss and caregiving, at the same time as managing the negative impacts of life-limiting illnesses.
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Whereas traditionally, Palliative Medicine was associated with cancer and end-of-life care, doctors completing training in Palliative Medicine are now expected to be able to manage palliative care issues for patients with a wide range of diagnoses and at different stages of people’s disease trajectory, including short-term interventions for patients with treatment options and reversibility. Increasingly, Palliative Medicine specialists are also consulted to provide specialist advice on patients with complex physical and psychosocial needs in the context of significant, but not necessarily life-threatening illness; trainees need to develop skills that support a needs and case-based approach to best support colleagues, patients and families with complex needs.
Rehabilitation compared to Palliative Care
One way of expressing the difference between the two is as follows.
Rehabilitation is:
- Centred on people with persisting disability
- And their families
- To ensure a ‘good life’
- Optimising a person’s social participation
- Minimising a person’s bodily and emotional distress
- Minimising distress of/strain on family/friends
Palliative care is:
- Centred on:
- People approaching the end of their life
- And their families
- To ensure a ‘good death’
- Optimising social participation
- Minimising a person’s bodily and emotional distress
- Minimising distress of/strain on family/friends
Both are:
- Active, educational, and problem-solving processes
- Set in the framework of a holistic, biopsychosocial model of illness.
These observations suggest that rehabilitation and palliative care have much in common and must become more familiar with each other’s expertise. Rehabilitation and palliative care services must establish close working relationships with each other locally.
Palliation in rehabilitation.
Rehabilitation minimises the limitation on a person’s activities, social participation, and any pain and distress arising from an illness. The second part, reducing pain and anguish without aiming to remove or treat the cause, is palliation. Therefore, palliation is a central area of expertise for a rehabilitation clinician.
The management of pain, especially chronic pain, is a specific competency within the rehabilitation syllabus because pain is common and significantly impacts many functional activities, including cognitive functions.
Pain is influenced by many factors, with tissue damage being only one. All pain needs careful evaluation to understand its aetiology and the interventions required. A rehabilitation expert is unusually well-placed to diagnose and manage chronic pain because they know the biopsychosocial model of illness and the complex inter-relationships between many factors, including disease. I have written two posts illustrating this, on and on the NICE guidance about chronic pain.
The identification and management of distress is less well undertaken in rehabilitation, as in many other areas of practice.
With the development of clinical psychology services, many clinicians feel they need more expertise and training and that psychologists should manage most emotional difficulties. This is part of a general trend of specialisation in healthcare, where people believe an expert should address every clinical problem.
Secondly, clinicians find managing distress distressing and avoid raising any topic that might cause distress. For example, asking someone, “Do you cry easily?” as a screening question for emotionalism after a stroke may elicit a bout of crying, so the clinician may not ask; the patient too may avoid mentioning their emotional distress because they know they may show distress and worry that the clinician may be distressed.
A rehabilitation expert must develop the skill of detecting distress that is not mentioned and analysing the nature and causes of the misery. They should also have the knack of initial and first-line management of emotional challenges sufficient to manage most distressed people without onward referral.
End-of-Life care in rehabilitation
Rehabilitation services will manage many people with a significantly reduced life expectancy. For many patients, the rehabilitation service is the only team they know well and who knows them well. The team must have reasonable knowledge and skills concerning end-of-life care.
Advance care planning should be discussed with every patient with a significant disability at an early stage. Doing this opens a challenging topic before a crisis arises when it is easier to discuss the issues. In patients where specific complications are likely, they should be addressed and recorded. Examples include:
- Use of a gastrostomy tube in anyone liable to need one,
- Use of ventilatory support in people who may need it (e.g. motor neurone disease)
- Cardio-pulmonary resuscitation
One should also discuss whether the person wishes to make an Advance Decision to refuse treatment, for example, not to have a gastrostomy tube when swallowing deteriorates and an Advance Statement in case they lose the mental capacity to make decisions. There is no need to involve a lawyer. Third, one should discuss appointing a person with power of attorney to make healthcare decisions. Forms for these documents are available online.
The ReSPECT form can be used to summarise the situation. Still, a more detailed description of preferences and choices must be made to support the record as it may not become relevant for some time after contact with the person who completed it.
A rehabilitation service rarely admits someone for end-of-life care, but people may well die whilst an inpatient and the service may be asked by a care home team to advise on end-of-life care for a person they know well. Occasionally, the rehabilitation team may decide that active medical treatment on an inpatient is no longer in their best interests, in which case the team will probably be responsible for end-of-life care.
Thus, a rehabilitation expert must learn how to:
- Anticipate decisions that might be needed near the end of a patient’s life and document their wishes,
- Manage the end of a person’s life with support if necessary,
- Recognise when a patient’s paramount need is for end-of-life care rather than rehabilitation,
- Liaise closely with the local palliative care service.
Conclusion.
Rehabilitation has much in common with palliative care, sharing similar knowledge and skills. Both have a holistic approach, but the primary focus differs. Rehabilitation experts should develop knowledge and skills concerning the palliation of pain and distress, like a palliative care expert. In contrast, their expertise in end-of-life care will mainly focus on advanced care planning and straightforward care of a dying person. They must learn to liaise closely with palliative care services, which may welcome more expert rehabilitation input and will provide expertise for many patients seen in rehabilitation services.
