Family Experiences of Vegetative and Minimally Conscious States

Guilt and regret

Feeling haunted by guilt was a common experience for many people we interviewed. A few felt guilty about the injury itself (‘If only I had been with him that night’), but mostly they felt guilty about what had happened since then.
 
It often seemed to be a ‘Catch 22’ situation. Parents felt guilty for not spending enough time with their injured teenager in hospital, but also guilty for neglecting children at home, wives felt they had abandoned husbands because they were so focussed on the needs of an injured brother, adult sons felt guilty for focussing so much of their wife in the care home that they were unable to support their own elderly parents. People also described feeling helpless - at a loss about what more they could do for their injured father, sister or son. Many of the people we spoke to regretted past decisions to intervene to save the patient’s life, at the same time as wondering if more could have been done to help the person recover, or to reduce their pain or distress.
Decisions about what to do in such circumstances are always difficult. Rifat was one of only two people we interviewed whose relative was being treated outside the UK. Her father was in hospital in Bangladesh – her family wish they had not taken him to hospital when he became short of breath, as then he would have simply died when he had his cardiac arrest. They now face a series of difficult decisions.
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Feeling responsible for difficult decisions about providing or withdrawing medical treatments was a major source of stress for family members.
Although family members are the decision-makers in many parts of the world (including Bangladesh and the USA) this is not the case in the UK where, in fact, even the named ‘next of kin’ cannot consent to or refuse treatment on behalf of another adult. In the UK it is the responsibility of the treating clinician to make decisions in the best interests of the patient. It is also the duty of clinicians to consider the benefits and harms of every treatment, including the ‘feeding tube’ – it should not be left up to family members to initiate such discussion.
 
Those we spoke to were sometimes shocked and outraged to discover that, in law in the UK, they were not empowered to make decisions for their relative, but they could also feel relieved.
To learn more about clinicians’ responsibilities for decision making seeDecision –making: the legal situation and clinical practice’.

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