Consultation with family ensures a dignified end for Mr Singh

New guidance for doctors on end-of life decision making for different  cultures

It is difficult for most of us to think about the kind of death we’d wish to have, including the treatment and care we would want at the end of life. Medicine is becoming ever more complex and many of us may be faced with choices at the end of our lives that were not available in the past.

New guidance from the General Medical Council – the regulatory authority for doctors in the United Kingdom – asks doctors to take a holistic approach that takes account of a patient’s culture and religion, their personal preferences and input from their famil,y and the significance of these factors as they near the end of life.

So what does this mean for Sikh patients and their families? And what happens when they wish for the patient to be cared for at home, but a doctor has concerns about how this is managed? The GMC has considered how this scenario may play out in the fictional case of Mr Singh.

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Mr Singh is 82 and the head of a large family. He had a stroke two months ago which left him unable to communicate in any meaningful way, and with a reduced level of consciousness. He did, however, retain the ability to swallow soft food and his family has been caring for him and feeding him at home.

During the last week his consciousness level has declined and he is now having difficulties swallowing. Dr Dawson, Mr Singh’s GP for the past six years, suspects that he may be suffering from further bleeding in the brain.

She is concerned that Mr Singh may choke on his food or inhale it into his lungs and discusses her concerns with Mr Singh’s daughters. They want to continue caring for their father at home and feeding him by mouth if this is possible.

Dr Dawson asks Dr Garcia, a Palliative Care consultant, to assess Mr Singh at home. She recognises that Mr Singh has been very well cared for by his family, but Dr Garcia is concerned that Mr Singh’s swallowing difficulties mean that he may not get sufficient nutrition and hydration by mouth and might even be dehydrated.

Dr Dawson, the GP, knows how important it is for Mr Singh and his family for him to be at home, surrounded by his family and community and to be cared for in accordance with his cultural beliefs.

Dr Garcia concludes that Mr Singh should be given a drip to hydrate him but that he can continue to be cared for at home, including careful feeding of soft food, as long as his situation is closely monitored and reviewed by her team in case his situation declines further. Mr Singh’s daughters agree.

Unfortunately, two weeks later, Mr Singh is admitted to hospital with a chest infection caused by inhaling food into his lungs. He is treated with antibiotics and a drip is inserted to provide hydration while his situation is monitored.

A scan shows that Mr Singh has suffered progressive bleeding in the brain, and, sadly, it is clear that Mr Singh is no longer able to take food or fluids by mouth.

Dr Garcia judges that Mr Singh only has a few days to live and that nutrition or hydration by tube or drip would not extend his life any further. She believes that his care should now be focused on managing any pain and other symptoms and keeping him comfortable. She explains that this would mean Mr Singh could be transferred home if that was what he would want to happen.

The family struggle to come to terms with their father’s situation. They are anxious to meet his wishes to die at home but do not really understand what it will involve and are worried about him not receiving nutrition or hydration.

But they speak to the hospital’s multi-faith chaplaincy and the healthcare team, and the are reassured that they will continue to receive support from the palliative care team to help them care for Mr Singh. They agree that the care of their father should focus on managing any pain and other symptoms and ensuring their father’s dignity and comfort will be maintained.

The team is able to meet Mr Singh’s wishes to die at home. He is transferred home where he dies peacefully five days later.

This scenario is one of several case studies and materials produced by the GMC to help both doctors and patients to understand new guidance: Treatment and care at the end of life: good practice in decision-making.

The GMC hopes that the guidance will help to ensure better care for all patients – no matter what their culture or religion – when doctors are providing treatment and care for patients who are reaching the end of their lives. For further information, visit www.gmc-uk.org/guidance/end_of_life_care