Planning legal arrangements for the future often involves imagining some upsetting situations. One uncomfortable possibility is the idea of suffering from a long-term, debilitating illness or injury. You might ask yourself: what would be the effect on your family if you were put into a coma or needed ongoing life support? If there was no hope of recovery, would your family be able to take the decision to stop your treatment? Would you want that burden placed on their shoulders?
It is not our intention to cause any distress with this post, although the issues it deals with are undoubtedly emotive. Instead, we hope to prompt you to think about your views on these topics. Preparing is often a good way to avoid, as far as possible, many of the difficulties that you and your loved ones might face. As unpleasant as these situations might be to think about, if they arise, they are exactly when you need legal support the most.
Advance Decisions or ‘Living Wills’
An Advance Decision (also sometimes called a Living Will) allows you to detail circumstances where you would prefer to refuse specific treatments. If your condition meant you were unable to communicate your wishes, or you lacked the mental capacity to decide, an Advance Decision you had made previously would be taken as confirmation of your wishes. Advance Decisions can also detail when you would wish to refuse life-sustaining treatment.
They allow you to take pre-emptive control of such situations. An Advance Decision is legally binding, so the medical professionals that treat you must comply with it.
Some examples might be to refuse:
- Blood transfusions
- Organ transplants
- Clinically administered nutrition and hydration
You can make an Advance Decision for any reason; it could be on the grounds of religion, ethics, or just personal preference.
Other ways of preparing yourself
Advance Decisions are not the only way you can reduce the upheaval for your family:
- Advance Statements – These differ from Advance Decisions in several ways. Advance Statements specify the people you would like to be consulted in situations where you cannot decide for yourself. Also, Advance Statements are not legally binding. They are much less formal than Advance Decisions; they can even be made verbally – although this would make confirming or proving the statement difficult.
- Lasting Powers of Attorney (LPAs) for Health and Care – Again, this is a way of specifying who should have decision-making power on your behalf. Your chosen Attorneys would be consulted by any doctors who are treating you and would have the responsibility of deciding on your behalf. You can give your Attorneys the right to make decisions about life sustaining treatment, or give this right to the doctors treating you – this decision is entirely up to you.
One of the drawbacks to putting these alternatives in place, instead of an Advance Decision, is that they still place the burden of the decision upon other people: either your Attorneys or doctors under an LPA, or the specified people in your Advance Statement. If your goal is to avoid that pressure from being placed on a loved one’s shoulders then an Advance Decision is a better way of achieving this.
What are the benefits of preparing?
There are many good reasons to avoid the uncertainty of failing to prepare:
- You decide matters for yourself based on your own views, beliefs, and ideas on quality of life.
- You might experience pain or discomfort but be unable to communicate this.
- You ensure that others do not have to decide for you. Leaving loved ones to determine your treatment, or when to stop life-sustaining treatment, can be a burden you may not wish to place on your family.
- You avoid your family facing other difficulties such as the legal expense and time of seeking court approval to withdraw life-sustaining treatment.
This last point is important. It is an established legal precedent that court approval should be sought when life-sustaining treatment is being withdrawn.
However, a recent ruling by the Court of Protection may change this. Besides the potential legal significance of the case, it serves to illustrate the realities families face when trying to do what’s best for a loved one on life support.
The case of M v A Hospital  EWCOP 19
A 50-year-old lady, referred to only as ‘M’, was receiving life-sustaining treatment whilst in an almost completely unconscious state. She had been suffering from Huntington’s disease for nearly 25 years – a severe and incurable degenerative condition which leads to neurological decline and ultimately death.
M had been bedridden at the hospital for 10 years and was being kept alive by clinically assisted nutrition and hydration (CANH). In 2016, the treating doctors and M’s family agreed that keeping her alive in this way was not in her best interests. They applied to the Court of Protection for an order to allow the withdrawal of M’s CANH.
The statements of M’s family, included in the Court’s judgment, make for particularly upsetting reading. M’s mother said:
“I continue to visit M at least 4 times a week. I insist that I should do her laundry. As her mother, I want to ensure that she is clean and comfortable and that her clothes smell clean and like home, rather than coming from the hospital launderette. Going to see M and caring for her is a huge part of my life. For years now, I find myself getting up, and instead of going to work like anybody else, I have gone to the hospital to see my daughter…”
Other members of M’s family also expressed how difficult it was to see her in this situation. M’s adult daughter said:
“I feel that it would have really distressed her if she knew that she would be left living in this way…”
M’s husband said:
“M does not recognise me or the children and her quality of life is virtually non-existent. […] She was vivacious and full of life before the onset of her illness, and in my view, she would not have wanted to be kept alive with no hope of recovery or improvement…”
M’s mother also described how “incredibly difficult” it had been for them to conclude that stopping M’s treatment was in her best interests.
The Court allowed the application and M’s treatment was stopped. She died just over a week later.
The question arose as to whether court permission should always be required in such cases. The judge ruled that, in cases where life-sustaining treatment is being withdrawn from patients with severe illnesses, court permission was not required if clinical guidelines had been followed and the family and treating medical team agreed.
Does this ruling reduce the importance of Advance Decisions?
Aside from the prolonged emotional distress, applications to the Court of Protection can be expensive and lengthy.
In M’s case, the judge estimated the legal costs for the matter to have been around £30,000. The judge also noted that M received CANH for almost a year waiting for a court hearing even though both family and clinicians agreed that ongoing treatment was not in her best interests. Had there been a dispute in M’s case, the time and expense would have been even greater.
Removing the need for court approval in such cases also removes a significant reason why Advance Decisions can be so useful in these situations. However, the ruling does not diminish their usefulness for several reasons:
- Disputed cases still require court approval: If your treating doctors and your family were to disagree, court permission to withdraw treatment would still be required. Similarly, court approval would also be needed if other conditions specified in the judgment were not met. A valid Advance Decision is legally binding so there can be no dispute over your wishes or what your treating doctors must do.
- Advance Decisions provide other benefits: As detailed above, avoiding the need for court involvement is only one of the reasons why an Advance Decision can be useful. They clearly indicate your wishes, reassure your family, and take difficult decisions out of their hands at an already distressing time.
- Advance Decisions do not just involve the withdrawal of life-sustaining treatment: They also allow you to specify when certain other kinds of treatment should be refused.
There may be an appeal made against the Court’s ruling on the need for approval. The Official Solicitor argued against removing the requirement. Their position was that court permission should be required ‘in every case of proposed withdrawal of CANH, unless there is a valid advance directive’, in other words, a valid Advance Decision.
What should I do?
No one likes to think that they might suffer from a severe debilitating illness or injury in future. However, if you feel strongly about certain kinds of medical treatment, or you are worried about the impact such an event would have on you or your family, considering an Advance Decision is a good place to start.