This article addresses how legal provisions for people choosing where and how they die, such as advance directives and lasting powers of attorney for health and welfare, affect those with intellectual disabilities.

Claudia Camden-Smith (UK)

End of life care has come a long way in England and Wales over the past 20 years with more and more people choosing to have autonomy over where and how they die. Legal provisions such as advance directives and lasting powers of attorney for health and welfare have provided a framework by which people can ensure that their wishes are followed, wherever possible, once they have lost the ability to make their own decisions. This article will address how these legal provisions affect those with intellectual disabilities.

Do Not Attempt Resuscitation orders (DNARs, sometimes called DNRs)

These are orders made by the treating medial team in cases in which Cardio-Pulmonary Resuscitation (CPR) is not to be attempted. These can be made because CPR is not likely to be effective or where CPR is felt not to be in the patient’s best interests. CPR has been described as ‘the opposite of a peaceful death’, involving as it does intense medical and physical intervention. DNARs are therefore particularly useful in cases in which the person is likely to die from a cardiac or respiratory arrest, but wishes to be allowed to die peacefully at home, in hospice or in hospital.

DNAR orders are approved and signed by the consultant in charge of the patient’s care. They are not legally binding and there is no single agreed format, although hospitals may design and use their own forms so as to ensure consistency and easy access to the forms by treating teams.

The recent case of Winterspear v City Hospital Sunderland NHSFT (2015) EWHC 3250 (QB), (2015) MHLO 104 clarified the legal position as regards consultation with the family. This was a case in which a man with a learning disability and pneumonia was admitted to hospital. The treating physicians placed a DNAR order on him early in the morning without consulting his mother. When his mother discovered this the next morning, she objected strongly and the DNACPR order was removed. The hospital argued that it had not been practicable and appropriate to contact the mother in the early hours of the morning.

The judge (Blake J) ruled that:

‘The core principle of prior consultation before a DNACPR decision is put into place on the case file applies in cases both of capacity and absence of capacity. If it is both practicable and appropriate to consult before doing so then, in the absence of some other compelling reason against consultation, it would be procedurally flawed to proceed without consultation. It would not meet the requirements of MCA 2005 s4(7); it would accordingly not be in accordance with the law. It would be an interference with Article 8(1) that is not justified under Article 8(2). (2) The claimant (patient's mother) sought damages both personally and as personal representative. The judge was not persuaded that she has any personal claim for damages, and decided that a declaration reflecting the procedural breach of Article 8 was sufficient.’

This is an important ruling for doctors to note as it places a legal obligation on the doctors to consult with the family of the patient wherever possible whether or not the patient has capacity. It is worth noting that this would have to be ‘a compelling reason’.

Specific issues related to people with an intellectual disability and DNAR orders:

People with intellectual disabilities often have complex medical needs, some of which might make resuscitation more difficult or less likely to be successful. A careful balance needs to be struck between taking into account people’s complex health needs and ensuring that decisions not to resuscitate are not based purely on someone’s diagnosis. Although knowledge of intellectual disability and awareness of the value of the lives of people with an intellectual disability has improved substantially over the past twenty years, some medical teams may still be inclined to place lower values on the lives of people with intellectual disabilities or be more pessimistic about the health outcomes of those with intellectual disabilities.

It is, therefore, important that treating teams communicate clearly within the team and with all those concerned in the patient’s care (including the patient wherever possible) so that the decision can be a joint one and so that everyone is aware of the rationale behind the decision. Wherever possible, these meetings should be documented in the patient’s notes so at to provide evidence of consultation and the rationale behind the decision.  As recently as 2012, the family of a man with Down’s syndrome was unaware that the treating team had made a DNAR until the man returned home and they found the document in his belongings.  They have since taken the case to court claiming discrimination on the basis of his intellectual disability[1].

Advance directives (also known as advance decisions)

The Mental Capacity Act (2005) has brought in a legally-binding provision known as advance directives. These have in the past been referred to as ‘living wills’. Despite the phrase ‘living will’, advance directives apply to any form of medical decision which may need to be taken once the person loses capacity. Advance directives are legally-binding decisions made while someone has capacity, relating to consent to treatment once they lose capacity. For example, someone may make the decision to refuse intravenous feeding should they lose capacity in the future. They can only be used to refuse consent to specific treatment and cannot be used to request that certain treatment be provided or to give consent for specific treatments in the future.

Advance directives do not need to be signed, unless they relate to refusal of treatment that would save someone’s life. They do not need to be drawn up by a lawyer nor follow any specific format. They should be readily accessible so that the treating team can access them quickly in an emergency situation. While DNAR orders apply only in the hospital in which they were drafted, advance directives apply to all treatments, whether in a specific hospital or any other setting.

If a doctor does not comply with a legally-valid advance directive, then they are breaking the law and can be prosecuted. However, if the doctor reasonably believes that the advance decision is not valid, then they are required to act in the person’s best interests as they would if the person does not have an advance decision. The person or their representative would also have to prove that the doctor was aware of the advance directive.

The situation in Scotland and Northern Ireland is slightly different, in that the Mental Capacity Act does not apply and so the legal basis for advance directives is one of common law.

Reasons why an advance decision may not be valid for specific treatment:

Reasons why an advance decision may not be valid for specific treatment:

  • The person did not have capacity to make the decision at the time the decision was made.
  • The document is not signed (if relating to life-sustaining treatment).
  • The document does not refer specifically to the treatment proposed.
  • The person has done something that implies that they have changed their mind (for example changed religion).
  • The person could not have foreseen advances in medicine that would affect their decision (unless specifically mentioned).
  • The request is illegal (such as for assisted suicide)
  • The decision relates to treatment for a mental disorder (the Mental Health Act allows for doctors to treat someone for a mental illness even if they have capacity and refuse).

Specific issues related to people with an intellectual disability and advance directives

People may wrongly presume that a person with an intellectual disability is not able to discuss or understand complex issues relating to end of life care. Provided the person is assisted to understand the decision and has capacity to make the decision, then advance directives are as applicable to people with an intellectual disability as they are to anyone else.

Lasting Power of Attorney for Health and Welfare

Although most people are aware of Lasting Powers of Attorney for financial decisions, the Mental Capacity Act also makes legal provision for Lasting Powers of Attorney for Health and Welfare. Again, this only applies in England and Wales as Scotland and Northern Ireland have their own common law relating to capacity.

A Lasting Power of Attorney allows for someone to be appointed to make decisions on behalf of the patient when they lose capacity. The document is drawn up when the person has capacity, but is only filed when the person loses capacity. If the person then regains capacity, the document ceases to be valid. If the document is filed, the person can challenge its enforcement if they can demonstrate that they have not lost capacity. The document usually specifies two (or more) deputies to guard against one being unable to act (illness, death, out of country etc). Deputies can’t be added after the document has been filed unless the person regains capacity and changes the Power of Attorney themselves.

As its name suggests, the deputy can only make decisions relating to the health and welfare of that person, this would include decisions such as where to live, assistance with personal care, and consenting to treatment. Any decision they take as the deputy is to be treated as legally binding as if the person themselves had capacity and made the decision. However, the deputy can only make decisions that can be demonstrated to be in the person’s best interest. Although Lasting Powers of Attorney for Health and Welfare are seldom made, they can be a very powerful tool to ensure that someone who knows the person and their wishes is consulted when decisions are made.

Mental Capacity Act

In the absence of one of the legal provisions above, any treatment decisions taken regarding   people who lack capacity must be made in accordance with the Mental Capacity Act (2005). The full scope and use of the Mental Capacity Act is dealt with in depth elsewhere, but some factors are worth reiterating in the context of end of life care.

The fundamental tenet of the Mental Capacity Act is the ‘presumption of capacity’. This means that all people are presumed to have capacity to make a decision unless it can be shown that they do not. Health care providers may wrongly assume that patients with an intellectual disability do not have capacity to make complex or difficult decisions such as those around end of life care. Great care needs to be taken to ensure that the person has been assisted to engage in the process and that action has been taken to maximize the chances of the person being able to make a capacitated decision. If the decision is not urgent, it may be that repeated visits and education are required before the person is able to make the decision. (Ref. 1)

If the person does not have capacity to make the decision, then the Act requires that any action taken is taken in that person’s best interests. For decisions with serious implications, these are best taken as part of a formal best interests meeting, preferably with an independent mental capacity advocate (IMCA) representing the patient if no one else is able to do so. Even if the person does not have capacity to make the decision, their views and wishes should be elicited and given great weight. Talking about death is not easy and people may feel that discussing death with a patient with intellectual disabilities is likely to cause distress. Given support and time, there is no reason why someone with an intellectual disability is not able to engage in the process of preparing for death.

A patient of mine with an intellectual disability, was admitted to hospital physically unwell. It was discovered that she had a large renal tumour and that any further treatment would be palliative. In discussing it with her, with the assistance of the Community Learning Disability Team who knew her well, she was able to understand the treatment options available to her and made choices (Refs. 2 and 3). She chose not to undergo any further medical or surgical treatment and elected to return home. She told us that she wanted to die at home and that she wanted to be buried in a white coffin, with some of her stuffed toys, in the same grave as her mother. Knowing this enabled us to support the hospice in providing care at home and also helped us to prepare her for death. She was able to go through the process of dying secure that we knew and understood her wishes and that she would not return to hospital. She died peacefully in her sleep and was buried according to her wishes.

This article was first published on this site in 2015 and was updated in 2016.

References

Mental Capacity Act 2005 NHS website

Mental Capacity Act 2005 legislation.gov website

1. Tuffrey-Wijne, I – Breaking Bad News

2. Donaghey V, Bernal J, Tuffrey-Wijne I, Hollins S, Webb B (2002). Getting on with Cancer,  London : Books Beyond Words

3. Hollins S, Tuffrey-Wijne I, Kopper L (2009). Am I Going to Die? London : Books Beyond Words