End of life care

Rosemary Scott explores end of life care, from a personal and a professional perspective

It is comforting to think “there is always tomorrow”, but when you’re faced with mortality, following a terminal illness, or an untreatable disease, it is difficult to think so positively. When future plans and life-long goals are no longer attainable, it can be very distressing for the patient and their relatives. Managing patients and relatives at this stage of their lives is no easy feat; everybody is emotionally charged, anticipating the difficult grieving process ahead.

It is important to put ourselves in the family’s shoes, and remember to support them mentally as well as clinically

I have experienced end of life care within my family and it is a very different experience when you are suddenly on the other side of the fence – the patient’s relative rather than the health professional. Being on the receiving end of healthcare, you are emotionally attached and your thoughts revolve around your relative’s emotions and comfort. It will be important for me to remember these feelings and thoughts to ensure that I will be a more understanding and empathetic doctor.

As practising doctors it is important to draw on not just our own, but others’ experiences, to deliver better end of life care. As clinicians it is almost an emotional defence mechanism to detach ourselves from the situation and the patient.

But it is important to put ourselves in the family’s shoes, and remember to support them mentally as well as clinically.

Dr Bob Taylor, Consultant, Paediatric Intensive Care, Royal Belfast Hospital for Sick Children, says that doctors often have to initiate the most difficult conversations at the most difficult time for patients, their families and carers. “These conversations are so important in reducing the distress and anxiety that are often felt as patients approach the end of life. I have seen first-hand the enormous benefits brought by doctors working closely with the patient, their family and carers, and the wider healthcare team through every stage of treatment and care.”

What is end of life care?

Firstly, it is important for healthcare professionals to recognise when a patient is approaching the end of their life in order to comply with the guidance. End of life care is defined by the GMC as care for patients who are likely to die within the next 12 months, or whose death is imminent (expected within the next few hours or days). This includes those with:

  • advanced, progressive, incurable conditions
  • general frailty with coexisting conditions, which means they are likely to die within the next 12 months
  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition 
  • life-threatening acute conditions caused by sudden catastrophic events 
  • neonates
  • persistent vegetative state (PVS).

GMC guidance

Facing end of life issues is a difficult time for all involved, even experienced healthcare professionals. The GMC has released new guidance: Treatment and Care Towards the End of Life: Good Practice in Decision Making. It is based on well-established ethical principles, dignity, respect and compassion. The guidance states: “Patients who are approaching the end of their life need high-quality treatment and care that support them to live as well as possible until they die, and to die with dignity.”

The Mental Capacity Act (2005), Adult Incapacity Act (Scotland) and Human Rights Act (1998) are considered throughout the guidance to ensure that care provision is ethically and legally accepted within our society. The guidance covers:

  • decision-making models 
  • organ donation
  • conscientious objections
  • do not resuscitate orders (DNRs)
  • neonates, children and young people
  • clinically assisted nutrition and hydration.

Advance care planning

For the first time, the GMC has given guidance on advance care planning, including how to manage advance requests and refusals of treatment. It was updated to reflect concern from patients that they would not receive the treatment and care they would want towards the end of life.

Good communication is essential

Every patient’s wishes for their final days will be different so it is essential for clinicians to communicate well with the patient and their relatives, and with colleagues to ensure those wishes are granted. Jonathon Hope, a member of the Patient and Carer Steering Group, believes that the GMC’s new guidance will help all patients have a voice in how they want to die.

He said: “I have had 25 years of kidney failure and in that journey I have faced death, seen fellow patients die, observed the difference between a good and a bad death and cared for the dying. Much of the care has been exceptional; however, I believe it would be easier for us to each receive the end of life care we would like if, as doctors and patients, we were more open about dying.”

Mental capacity

Deciding on treatment options and care plans for patients has to be done on an individual basis, depending on the patient’s mental capacity and legal decisions already made. If the patient has the capacity to decide:

  • Assess the medical situation with the patient, taking into account the patient’s medical history, views, experience and knowledge.
  • When discussing treatment and care options, allow the patient to calculate the risks and benefits and come to a final decision.
  • Recommend an option, but do not force this upon the patient.
  • Should the patient ask for treatment that would not be clinically appropriate, discuss these issues with them and explore their reasons. You do not have to provide the treatment.

If the patient lacks the capacity to decide:

  • Be clear about what decisions have to be made. 
  • Check whether there are any legally-binding advance decisions or directives to refuse treatment, or whether anybody else holds legal authority to make patient decisions (attorney or legal proxy). 
  • Legal proxies include: 
    • person holding lasting power of attorney, court-appointed deputy (England and Wales). 
    • Welfare Power of Attorney, court-appointed guardian or intervener (Scotland).
    • Northern Ireland currently has no provision for appointing legal proxies with the power to make healthcare decisions.
  • Check the validity and applicability of the legal documents, as not all healthcare decisions may be covered by the legal proxy.
  • Take responsibility for deciding which treatment will provide overall benefit to the patient. When no legal proxy exists and you are the doctor with responsibility for the patient’s care, you must consult those close to the patient and members of the healthcare team to help you make your decisions.

Thinking outside the box: Supporting families

There is no reason why patients shouldn’t stay positive and in fact look forward to tomorrow

It is easy, as clinicians, to get bogged down with the clinical management and legalities of end of life care, but we are treating a person. It is easy over time to become desensitised to death, but it is important to remind ourselves that this is a major life event and everyone involved may need psychological support. Those involved may need social, psychological and spiritual support.

However, it is not always recognised that support can be given at any time during the progression of the patient’s disease, not just during the last few days. Through charitable fundraising and government grants, more psychological services have been made available for palliative care patients. Access to counsellors, spiritualism and complementary therapies is now available and should be offered to all.

If doctors play their role and are sensitive to the issues faced by both the patient and their family, there is no reason why patients shouldn’t stay positive and in fact look forward to tomorrow.

Summary of advice on end of life care

  • Recognise when a patient is approaching their end of life and act in accordance with the new GMC guidance, which takes into consideration the MCA , AIA and HRA 
  • Communicate effectively with patients, relatives and colleagues to come to the correct decisions
  • Always act in accordance with the ethical principles:
    • beneficence (the ethical responsibility to do good)
    • non-malfeasance (the duty to do no harm)
  • Assess the patient’s mental capacity and act accordingly
  • Respect patients’ wishes and legally binding advanced decisions or legal authorities
  • Offer psychological, social and spiritual support to the patient and relatives throughout the progression of their end of life care to reduce emotional distress.

About the author: Rosemary is a fourth year medical student from Manchester Medical School.

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