End of Life Care

Medical treatments should not be provided to patients:

  • where they are unlikely to provide benefit
  • where they have been refused by a competent patient
  • where there is a prior advance decision that is valid and applicable.

In practice these decisions and associated discussions may be very difficult for clinicians and distressing for patients and their families. Questions of what constitutes futility, the extent to which patients wishes should prevail over clinicians, and how far patients should be involved in decisions have all caused particular difficulty.

Recent guidance has emphasized that competent patients must be involved in decisions to withdraw care, or withhold lifesaving treatments such as CPR, even if attempts are likely to be futile. For patients who lack capacity, all decisions should be taken in the fullest sense of their best interest, and take into account any known views of the patient and their family. However the specific wishes of patients and families should not override the views of clinical teams where the risks, burdens and benefits of a treatment outweigh any likely benefit.  The goal should be to reach consensus with patients or their families as sensitively as possible, providing second opinions wherever practical, and using mediation services and legal advice if necessary. The courts may be required as a last resort.

The following links explore recent cases involving end of life care and withdrawal of therapies in patients lacking capacity:

Links to key resources are provided below to key guidance from the General Medical Council (GMC), The Resuscitation Council UK and British Medical association (BMA). Professional bodies such as the Intensive Care Society also provide further resources, as do the GMC and BMA. Other bodies such as medical defence organisations and ethics groups also provide useful information. 

 

Resources

  • ReSPECT - Recommended Summary Plan for Emergency Care and Treatment - ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices. It provides health and care professionals responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment. ReSPECT can be complementary to a wider process of advance/anticipatory care planning.  
  • Fritz Zoë, Slowther Anne-Marie, Perkins Gavin D. Resuscitation policy should focus on the patient, not the decision. BMJ 2017;356:j813
  • Compassion in Dying - A UK charity that helps patients and their doctors draw up Advance Care Plans and other matters.
  • MyDecisions - An online tool for developing an advance decision and advance statement.

 

Other useful sources of information

 

Useful podcasts dealing with case specific situations:

 

Below is a link to an NHS Health Education England e-LfH e-learning module that deals with many of the issues addressed above:

 

At the end of life patients, families and clinicians may want to consider organ donation. Here are links relating to organ donation and religious beliefs:

 

 

*We have tried to find freely accessible resources on the practices and processes of the different religions around end of life care. We would be grateful for any additions to this section. If you know of any helpful open access resources in this area please contact us here


A summary of recent legal cases relating to the Mental Capacity Act

 

Three recent cases have received publicity and coverage, and demonstrate how courts in England and Wales will expect the Mental Capacity Act (MCA) to be applied when making assessments of capacity, or when deciding the best interests for those who lack capacity.

 

1. Paul Briggs

 

Briggs v Briggs [2016] EWCOP 53
Paul Briggs was seriously injured in a motor vehicle accident leaving him in a minimally conscious state, and reliant on clinically assisted nutrition and hydration (CANH). His brain injuries were severe, and he had no prospects for recovery to his former level of function or quality of life. The best case scenario presented, was that he would recover to live with pain and contractures, but be able to experience some pleasure and possibly make the simplest of decisions over his care. His family questioned whether continuing to provide CANH was in his best interests.

The judge having heard persuasive evidence from family and colleagues, felt that placing Mr Briggs’ views at the centre of the decision was paramount, and that “had Mr Briggs heard the evidence and argument that I have, including the evidence about his best case scenario and the possible distress, pain and difficulties he and his family may face if his CANH treatment is not continued he would have decided not to give consent to the continuation of his CANH treatment.”

Arguments that Mr Briggs should have more time for rehabilitation to allow a clearer picture to emerge of his recovery potential were heard, but ultimately the decision to withdraw active treatment was allowed, with the support of his family.

Mr Briggs had never made an advance decision about treatment, but would have been likely to have made this decision had he been presented with this future scenario when he was well. This emphasises that when best interests decisions are made, the MCA requires clinicians to make all efforts to ascertain what a patient’s past and present wishes would be concerning their current situation, balancing these with all other relevant factors.

 

2. Kings College Hospital NHS Foundation Trust v C

 

Kings College NHS Foundation Trust v C and V [2015] EWCOP 59
‘C’ was a woman who had recently had a breast cancer diagnosed, coupled with personal and financial difficulties arising from her lifestyle. In the judge’s summing up, she had “led a life characterised by impulsive and self-centred decision making without guilt or regret. C has had four marriages and a number of affairs and has, it is said, spent the money of her husbands and lovers recklessly before moving on when things got difficult or the money ran out”

She attempted suicide with a paracetamol overdose, but was left in a critical condition in intensive care, and reliant on renal support to stay alive. She strongly refused all treatment, knowing that she would die as a result.  In the view of hospital psychiatrists, she lacked capacity to make these decisions, as she did not believe in the possibility of her recovery. However, the court found that she did have capacity to make this decision.

C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society's expectation of what constitutes the 'normal' decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.”

This case emphasises that capacity is not a psychiatric diagnosis but a legal criteria regarding the ability to make a welfare decision. The assessment of capacity should not be prejudiced because a decision appears to be unwise, or goes against medical advice. It is also a reminder that under the MCA, capacity is judged against the complexity of a decision, and not the potential gravity of the outcome.

 

3. James v Aintree Hospital

 

Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67
Mr David James was a 68-year-old musician, who had been critically ill in ICU for some months, culminating in multi-organ failure. He had suffered a stroke and cardiac arrest, and required increasing levels of organ support. He lacked capacity to make decisions about his care, and his clinical team applied for a court declaration as to whether it would be lawful to withhold further active treatment and CPR. His family strongly argued that Mr James would have wanted all measures continued to preserve his life.

The court judged that active care could be lawfully withdrawn i.e. it was not in Mr James’s best interests to continue treatment. However, when deciding the case the judge stated that, “in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”

This case emphasises that clinicians must consider all aspects of a person’s welfare, not just their medical condition when making decisions. The views of family and close friends should be sought, to contribute their knowledge of what the patient would want in these circumstances. However, families should not impose their own views, and are not able to demand treatments that are inappropriate or unlikely to provide benefit.

 

Dr Andy McLeod
RCoA Safeguarding Group

August 2018