Palliative Care and Intellectual Disabilities
Pain is often the first indicator of injury and illness, but in a person with intellectual disabilities this warning sign could be easily missed.
Irene Tuffrey-Wijne, RN, PhD, Associate Professor in Intellectual Disability and Palliative Care
(This article was originally published in 2002 and has been updated in 2017.)
As people with intellectual disabilities are living longer, they are more likely to die of illnesses usually associated with old age, including cancer. This means that, like the rest of the population, many people with intellectual disabilities will require a period of palliative care at the end of their lives (Tuffrey-Wijne 2003).
This article looks at:
- Life expectancy
- Causes of death
- Palliative care
- Equity of access
- Assessment and control of pain and other symptoms
- Capacity, consent to treatment and end of life decision-making
- Communicating about illness, death and dying
- Family and carers
- Collaboration and support services
The life expectancy of people with intellectual disabilities has increased significantly during the last century (Patja et al. 2000). The increase in life expectancy for people with Down’s syndrome has been particularly marked, from 12 in 1949 to nearly 60 in 2004 (Bittles & Glasson 2004). Reasons for this dramatic shift include reduced childhood mortality and better knowledge, healthcare, advocacy and services (Yang et al. 2002) (Haveman et al. 2009).
Despite this positive news, life expectancy is still significantly below that of the general population. A government inquiry in England investigated the deaths of 247 people with learning disabilities between 2010 and 2012, the CIPOLD study (Heslop et al. 2013) http://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf
They found that the average age of death was 65 years for men with learning disabilities, and 63 years for women. That is, on average, 16 years younger than the general population.
It could be that the shorter life expectancy is due to something related to the learning disability itself. For example, some conditions that cause learning disabilities can also cause significant physical health issues, which may be life-limiting. However, there is mounting evidence that the shorter life expectancy of people with learning disabilities is also due to substantial health inequalities, leading to poorer outcomes (Emerson & Hatton 2013). This includes poorer access to palliative care services. The CIPOLD study found that people with learning disabilities are at risk of premature death that could be prevented by better healthcare provision. For example, the investigations that were needed to diagnose the problem were often not done or posed difficulties. Physicians were more likely to take a ‘wait and see’ approach. In a quarter of those who went to the doctor or to hospital, the concerns of the person with intellectual disabilities, their family or paid care staff said they were not taken seriously enough by medical professionals. Families of people with intellectual disabilities were significantly more likely than those of people without intellectual disabilities to not feel listened to (Heslop et al. 2013). This finding echoed earlier reports (Michael 2008).
Causes of death
The main causes of death for people with intellectual disabilities are respiratory disease, heart disease and cancer. In the CIPOLD study, cancer accounted for 20% of deaths among people with intellectual disabilities. (In the general population, 29% of deaths are caused by cancer. http://www.cancerresearchuk.org/health-professional/cancer-statistics/mortality )
There is a higher incidence of dementia among people with intellectual disabilities (Strydom et al. 2010). The incidence of Alzheimer’s disease is very high among people with Down’s syndrome, with around 40% of people with Down’s syndrome aged 60 and over suffering from the condition (although exact prevalence estimates vary).
The cancer profile for people with intellectual disabilities is slightly different from the general population, with a higher than average incidence of gastrointestinal cancers (Hogg & Tuffrey-Wijne 2008). People with Down’s syndrome have a significantly increased risk of leukaemia and a lower risk of many solid tumours, including a lower risk of breast cancer (Satgé & Vekemans 2011).
Palliative care is defined as “the active, total care of people whose disease is not responsive to curative treatment. Management of pain, of other symptoms, and of social, psychological and spiritual problems is paramount.” This requires an approach that includes not only the patient, but also the family and the community in its scope. (European Association for Palliative Care 1998)
The palliative care needs of people with intellectual disabilities are, in essence, the same as those of the general population. Who wouldn’t want to die a death that is free of pain and other symptoms, or spend time with their family or friends, or be listened to and involved when choices and decisions are made about their care and treatment? However, people with intellectual disabilities often have unique issues, challenges and circumstances that make it much more difficult to meet those needs. This includes, for example:
- communication difficulties which affect all aspects of palliative care provision
- difficulties around insight and the ability to participate in decision-making
- unconventional ways of expressing signs and symptoms of ill health and distress
- multiple co-morbidities
- complex family and social circumstances
- higher levels of behavioural or psychiatric problems.
The Palliative Care for People with Learning Disabilities (PCPLD) Network was set up in the UK in 1998 to bring together professionals, family carers and paid carers to share best practice and learn from each other. The PCPLD Network website http://www.pcpld.org/ has invaluable information, links to useful resources and relevant academic articles, to help improve end of life and palliative care provision for people with intellectual disabilities. In 2017, NHS England and the PCPLD Network worked together to produce a useful guidance document for best practice. https://www.england.nhs.uk/wp-content/uploads/2017/08/delivering-end-of-life-care-for-people-with-learning-disability.pdf
In 2015, the European Association for Palliative Care published a White Paper http://www.eapcnet.eu/LinkClick.aspx?fileticket=Iym7SMB78cw%3D in order to promote best practice in supporting people with intellectual disabilities at the end of life, setting out 13 important areas of practice and service delivery that are relevant in a wide range of settings, including the family home, independent living arrangements, residential care settings, nursing homes, hospitals and specialist palliative care settings. The White Paper is a useful document which contains aspirational norms, as well as best practice examples and links to useful resources.
Some of the key areas are expanded on below.
Equity of access
There is growing evidence that people with intellectual disabilities face significant barriers in accessing health services, including palliative care services (Emerson & Hatton 2013). In 2016, the Care Quality Commission (CQC) carried out a review of inequalities in end of life care https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_OVERVIEW_FINAL_3.pdf and concluded that people with intellectual disabilities can experience poorer quality of care at the end of their lives because providers do not always understand or fully consider their needs (Care Quality Commission 2016). A CQC briefing on end of life care for people with intellectual disabilities https://www.cqc.org.uk/sites/default/files/20160505%20CQC_EOLC_LearningDisabilities_FINAL_2.pdf highlighted lack of staff knowledge, poor understanding of the Mental Capacity Act, and communication problems as significant barriers to good care.
There is a risk of professionals attributing the signs and symptoms of ill health (which may take uncharacteristic forms of expression) to the intellectual disability itself rather than to the underlying illness – a phenomenon known as ‘diagnostic overshadowing’ (Reiss & Syzszko 1983).
Poor access to palliative care services may be due to the difficulties in recognising that palliative care is needed. When someone has intellectual disabilities, predicting the need for palliative care can be particularly challenging (Vrijmoeth et al. 2016). This is complicated by the fact that many people with intellectual disabilities have a number of comorbidities, such as epilepsy. Those with congenital conditions may have had complex health problems throughout their lives, so it can be hard to know when life-long and ongoing management of these problems turns into a need for palliative and end of life care.
From talking to many professionals over the years, I have discovered that those working in palliative care services often do not know the population of people with intellectual disabilities in their catchment areas and are therefore unlikely to reach out to them. Among those working with people with intellectual disabilities, there may be a misconception about hospice and palliative care services as being concerned only with the final stages of dying, rather than with helping people to live and cope with the life they have left. It may not be known to families and support staff that palliative care can be provided within people’s own homes.
To ensure equitable access to palliative care services, it is important to make ‘reasonable adjustments’ https://www.gov.uk/government/publications/reasonable-adjustments-for-people-with-learning-disabilities to healthcare services, in order to make them accessible to people with disabilities. In the UK, this requirement is enshrined in law (Disability Discrimination Act 2005). Examples of reasonable adjustments for people with intellectual disabilities include:
- Giving people information that is tailored to their communication needs (for example, providing easy-read materials and pictures, or opportunities to see clinical areas or equipment beforehand)
- Allowing more time
- Involving family and other care givers
- Providing staff training about the needs of people with intellectual disabilities
- Accessing expertise about intellectual disability when needed (for example, by engaging with intellectual disability nurses)
Assessment and control of pain and other symptoms
Pain is often the first indicator of injury and illness, but in a person with intellectual disabilities this warning sign could be easily missed. If a person is unable to communicate with words, pain and other symptoms (such as nausea, dysphagia, fatigue) may be communicated in different ways. These include:
- Vocal responses (crying, moaning)
- Adaptive behaviour (e.g. rubbing of the affected area, avoiding certain movements, keeping area still)
- Self-distracting behaviour (eg rocking, pacing, biting hand, gesturing)
- Facial expressions (e.g. grimacing)
- Withdrawal, low mood
- Sleep disturbance
- Self-injurious behaviour
- Hyperactive behaviour
- Autonomic changes (increased/decreased pulse, blood pressure, sweating)
Special skills of observation, together with a close knowledge of what is normal behaviour for an individual with intellectual disabilities, are needed to pick up signs and symptoms related to the illness. This can only be achieved by a close co-operation between health professionals and the person's carers. A useful tool to support the assessment of distress, and think about possible causes of distress, is the Disability Distress Assessment Tool (DisDAT). http://www.stoswaldsuk.org/how-we-help/we-educate/resources/disdat/disdat-tools.aspx
Capacity, consent to treatment, and end of life decision-making
The issue of consent to tests and treatments can cause anxiety and confusion among clinicians and carers alike. Clinicians may be reluctant to consider and provide the same range of treatment options for people with intellectual disabilities as for the rest of the population, because of perceived difficulty obtaining informed consent, or for fear of litigation. This is a complicated issue. People with intellectual disabilities may have difficulties with understanding risks and possible treatment outcomes, which require abstract thinking. This can lead to denied opportunities to give consent.
It is important to understand the law, which is different in different countries. In England and Wales the Mental Capacity Act (Department for Constitutional Affairs 2005) makes it clear that no-one, not even parents or medical staff, can consent on behalf of an adult who is not competent to give consent. The guiding principle should be that doctors must act in the patients' best interest if they cannot choose for themselves. It may be negligent to withhold treatment because the patient cannot give consent. It is also important to remember that capacity is decision- and situation-specific; in other words, it is possible for someone to have capacity to decide on one particular aspect of care or treatment at one moment, but lack capacity on another occasion or for another decision. It is therefore important to assess capacity for each decision. It is crucial to ensure that the person with intellectual disabilities has access to information in a format he or she can understand.
Communicating about illness, death and dying
Carers and health professionals are often unsure whether they should talk to a person with an intellectual disability about his or her illness, or the illness and impending death of someone close to them. There is a danger of creating a 'conspiracy of silence', where professionals, family and friends all know about the illness and impending death but will not talk about it in the presence of the patient. Reasons for such protection from bad news include “he won't understand”, “the truth is too upsetting”, “I will get too upset”, or “others don’t want him to be told”. However, there is also growing recognition of people’s “right to know”; of the fact that many people with intellectual disabilities cope better if they understand what is happening; and of the need for people to be involved in decision-making about their treatment and care (Tuffrey-Wijne et al. 2013) (Wiese et al. 2013). When it comes to bereavement, staff who work with people with intellectual disabilities tend to talk to them about death after the death of someone close to them has occurred, but not beforehand (Ryan et al. 2011).
Talking about illness and dying is never easy – but not talking about it doesn’t make the bad news go away! Comprehensive guidelines on breaking bad news to people with intellectual disabilities can be found here. http://www.breakingbadnews.org/ It is important to consider the person’s understanding and capacity; look at all the people involved in the situation; and think about the support everyone needs in order to help the person with intellectual disabilities understand what is happening.
Questions must be answered directly, honestly and simply. Health professionals should try to use the patient's own vocabulary. It is also possible to use aids such as simple demonstrations, or pictures – for example, from the Books Beyond Words series. https://booksbeyondwords.co.uk It is important to establish what the patient's history has been. Has anybody in the patient's social circle had a similar illness? Has there been any previous negative experience of hospitalisation? It may also be important to explain that this illness is not necessarily the same as others. Likewise, the patient may have formed certain images of what death will be like. Has anyone in his or her social circle died suddenly or in pain? Such images are not always expressed and they are not always realistic. Gentle probing could bring out the patient's worries.
Families and carers
People with intellectual disabilities themselves have indicated how important it is for them to have familiar people around at the end of life (Tuffrey-Wijne et al. 2007; McLaughlin et al. 2015). It has been shown that a lack of effective carer involvement leads to poorer outcomes for people with intellectual disabilities (Heslop et al. 2013; Tuffrey-Wijne, Abraham, et al. 2016).
Health professionals need to understand the nature of the relationships that the individual with intellectual disabilities has with his or her family, carers and close friends. Many people who have a life-threatening illness (whether they have intellectual disabilities or not) and their families have a strong need to have some deep and meaningful communication together. People with intellectual disabilities often have a very firm and important place in their social environment, and the impending death will mean a profound loss and a complete change in the family dynamics. In addition, if the person has left the family home to live in another care setting, carers may also have difficulty coming to terms with the impending loss. Health professionals need to be aware of these issues; they may be needed to provide sensitive support and aid honest communication.
Paid carers also need attention and support. In the UK, support staff working in intellectual disabilities services are often poorly trained and unprepared to work with people who are ill, dying or bereaved. However, the bonds they form with the people they support can be strong, and they too may be bereaved if someone with intellectual disabilities dies. Such staff will need significant support from managers, and would also benefit from support from outside agencies such as primary care teams or palliative care services.
Collaboration and support services
Research and case reports to date clearly indicate that people with intellectual disabilities receive the best end of life support if palliative care services and intellectual disability services collaborate. It is also important to establish who co-ordinates the care around the patient. Effective, pro-active facilities and support services are needed to help everyone manage the situation. It is important to look carefully at staff training needs. Involving palliative care staff to provide training for intellectual disabilities staff, and vice versa, can be very beneficial. Ad hoc practice support measures from the palliative care team or the intellectual disabilities team is also useful in many instances.
Health professionals are increasingly likely to work with a terminally ill patient who has intellectual disabilities. Whilst the principles of palliative care remain the same regardless of who the patient is, special issues may arise when the patient has intellectual disabilities. Focused attention is needed to deal with those issues. Health professionals need to take time to understand the way in which an individual communicates, to ensure that signs and symptoms are identified correctly and to address underlying worries in a sensitive manner. They also need to be aware of consent issues, and to ensure that the patient is kept central in any decision-making. This can only be achieved if everyone involved in the patient's care, including the family, carers and advocates, shares information and co-operates closely. Finally, as is imperative in providing good palliative care, the patient should be the most important member of the team.
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This article was first published on this site in 2002. It was updated in October 2017.