The General Medical Council (GMC) has updated the guidance it produces for doctors who are dealing with patients who are reaching the end of their lives. The guidance starts by stating that end of life patients ‘need high-quality treatment and care that supports them to live as well as possible until they die, and to die with dignity’. This includes patients whose death is expected within 12 months, those whose death is imminent, and extremely premature babies whose prospects for survival are known to be very poor.
The guidance, “Treatment and care towards the end of life: good practice in decision making” replaces the booklet "Withholding and withdrawing life-prolonging treatments (2002)" and expands on the guidance in "Consent, patients and doctors making decisions together", It will come into force on 1 July, 2010.
Key guidance to doctors
- Make the care of your patient your first concern
- Protect and promote the health of patients and the public
- Provide a good standard of practice and care
- Treat patients as individuals and respect their dignity
- Work in partnership with patients
- Be honest and open and act with integrity
- Medical treatment
Medical treatment
The guidance identifies some of the most challenging decisions in this area as being about withdrawing or not starting a treatment when it has the potential to prolong the patient’s life. It also notes that some groups of patients can experience inequalities in getting access to healthcare services and in the standard of care provided. It is known that some older people, people with disabilities and people from ethnic minorities have received poor standards of care towards the end of life. This reflects the experience of lawyers in the human rights department at Leigh Day who have represented a number of families whose loved ones have died in hospitals when their special needs caused by different types of disability have been ignored or mismanaged. Richard Stein, partner in the human rights team, welcomes the statement in the guidance that ‘if you are involved in decisions about treatment and care towards the end of life, you must be aware of the Human Rights Act 1998’.
Children and young babies
The human rights team, including partners Richard Stein and Frances Swaine, has represented a number of families who have disagreed with doctors and other medical staff about the treatment of their children. Sometimes this has meant that families and doctors have to go to court to try and resolve their differences. The new guidance states that all decisions must be taken in the best interests of the child. If a child has capacity it should be involved with decision-making. The guidance notes that ‘complex and emotionally demanding decisions may have to be made; for example, about whether to resuscitate and admit a neonate to intensive care, and whether to continue invasive intensive care or replace it with palliative care. It can be very difficult to judge when the burdens and risks, including the degree of suffering caused by treatment, outweigh the benefits of the treatment to the patient.’ The guidance stresses that cooperation with the parents of sick children is of paramount importance.
Leigh Day & Co clinical negligence partner Anne Winyard was a member of the Nuffield Council’s working party that also looked at the difficult questions surrounding the treatment of very premature or sick babies. The working party examined the ethical, social, legal and economic issues involved in such critical care decisions and their 2006 report contained the first week-by-week guidelines on when to give resuscitation to extremely premature babies.
Do not resuscitate notices (DNR)
Often people who are reaching the end of their lives do not want to receive cardiopulmonary resuscitation (CPR) treatment if they experience sudden cardiac or respiratory arrest. To avoid this patients can make an advance decision which can allow them to spend their last hours with their family, or in the community, rather than being rushed to A&E. The guidance notes that if the use of CPR is not successful it can often lead to a patient dying in an undignified and traumatic manner. The guidance examines different circumstances where the use of CPR is appropriate.
If you have questions or concerns about end of life decisions that affect you or a loved one please contact a lawyer in the human rights team at Leigh Day & Co on 020 7650 1200.
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