It can be tough for families when patients choose to die at home

Dad died peacefully at home, surrounded by his family, exactly as he had wished. We had anticipated the huge impact that Dad’s death would have on our family, and were therefore not surprised by the feelings of emptiness and loss that engulfed us all. We were not similarly prepared, however, for the practical difficulties and emotional challenges of caring for Dad at home.

Dad was admitted to hospital at the end of January 2012. His general condition had deteriorated, and extensive disease progression quickly became evident. In particular, he had great difficulty breathing and was using high flow oxygen constantly. A syringe driver was fitted, and Dad was prescribed extensive pain relief.

The palliative care team met with Dad alone, and he was adamant that he wanted to return home. This quickly became the focus of the patient centred plan, and the wheels were speedily put in motion to achieve his rapid discharge. A family conference with the palliative team confirmed that Dad would come home to die because that was what he wanted. The professional team had an unspoken ethos that the patient’s wishes were paramount and they had already asked for Dad’s view. Also, because the family consists of doctors, social workers, and teachers, there seemed to be an assumption that we could cope. Practical support would be provided.

Our home had been a refuge while Dad was in hospital, but was now invaded by hospital paraphernalia. A big hospital bed arrived, complete with inflatable mattress; the commode and bath equipment followed; then oxygen cylinders. We crammed furniture into other rooms as Dad’s bed became the centre of the home.

It is difficult to describe the feelings of panic that began to surface: there was now nowhere for the family to escape. We had to face the reality of Dad’s ill health without respite and felt guilty about such disloyal feelings. We were careful not to express such negative attitudes to each other. After all, Dad was facing his illness without escape and therefore so should we.

With hindsight we have acknowledged that we were not disloyal or selfish to have such thoughts. The emotional strain was in fact relentless. Some separate space that would have provided a brief haven, where we could have safely vented emotions, would have allowed us to recharge and carry on emotionally stronger.

Continuing care was patient centred, and the family shared the experience 24/7, sometimes to everyone’s detriment. Carers visited four times a day, night sitters attended every other night, and the district nursing service was supportive. Practically and medically Dad’s needs were well met. Despite the high level of support, however, most care needs still fell to the family. We were lucky because there were four of us. However, as time went on we began to worry how long we could maintain Dad’s care at home. We envisaged the problem, when we returned to work, of leaving Mum the impossible task of coping alone.

When Dad’s discharge was planned there was no discussion about how the family would manage a lengthy period of care, and we would have felt devastated and guilty to admit we were unable to cope.

But Dad died quietly after one week. We were left feeling sad but glad we were able to acquiesce to his last wishes. However, the experience of caring for Dad at home forcibly demonstrated several points that I, as a doctor, blithely thought I already practised. It is important to offer patient centred care but equally vital to ensure that this fully encompasses the total patient environment. Patients’ families are probably the most important members of the team around the patient. It is imperative not to make assumptions, and it is imperative to fully assess the role of families, taking account of their practical and, most importantly, emotional circumstances.

Families are under considerable pressure to care for patients at home, if this is their expressed wish. It is of course desirable if possible to achieve, but the damage to patients and families if care packages can’t be maintained must be substantial.

Dad died late on a Friday evening. It took four hours for the duty doctor to visit to confirm death, another hour for the undertaker to arrive, a further four days for the hospital equipment to be removed, and a week before the oxygen was collected. As a family we were left in our home, confronted by the empty hospital equipment, which certainly exacerbated our grief.

As doctors we need to be honest about the dilemma of patients’ wishes and our capacity to meet them. We need to take full account of families’ circumstances, and continuing care should not leave emotions of resentment or anger. Guilt should not be allowed to intrude on feelings of grief when a loved one dies at home.