Case Study – Living at home with muscular dystrophy, and choosing to die.


In the spring of 2013, Aster Care was approached by the Queen Alexandra Hospital Discharge Team to request 24 hour support for a 49 year old gentleman called Ian who had muscular dystrophy and a recently inserted tracheostomy (a tube giving access to the airways). Few people, if any, lived at home with a tracheostomy and a non-invasive BiPAP ventilation system back in 2013 in the Portsmouth area without the assistance of a qualified nurse. This would be a new and unusual challenge that would require some thinking outside of the box, especially with regards to training non-nurses to carry out what was considered to be a nursing task.

Our acceptance of Ian’s care package would end his nine-month hospital stay and bring him home. It would avoid discharge to a nursing home, which would meet Aster Care’s mission to provide intensive support in the community to achieve this. It would also mean the care to Ian could be provided in a more cost effective manner rather than using  qualified nurses.

Little did we know at this point that the care delivery would be so successful that it would continue for nine wonderful years, teach us new ways of doing things, and show us  a new approach to end of life care that would change our perspective forever. 

Discharge planning and ongoing training

A team of 12 people were selected to care for Ian, all of whom went to meet him in hospital. Here they learned how to perform deep suctioning on a dummy, and use the associated BiPAP, suctioning, and cough assist equipment. Ian also encouraged the staff to practice deep suctioning on him, too. Shifts were structured into two x twelve hours shifts; one day and one night shift. Within a couple of weeks, Ian was home.


Planning for staff changes was a crucial part of Aster Care’s role. No staff member could support Ian without deep suction/equipment training and so it was essential we developed an induction training programme that could swiftly deliver this training to a high standard. And so, working with the specialist tracheostomy nurse, two staff members (and later more) were trained to disseminate the tracheostomy care.  We developed a comprehensive Tracheostomy Training programme with an assessment to ensure staff were competent. A replica dummy head used at the hospital was also purchased so staff could practice deep suctioning.  He was later named Frank!


We introduced a  service user involvement policy which saw by Ian and his wife Elaine informally interview staff who could care for them. If they were happy, formal person-centred training would be given and Ian would say if when he was confident the new staff member could work alone.  This was an empowering process which kept Ian in control throughout his period of care.


Nine years at home - achieving the goals

With a structured training programme in place, the care package settled down and ran smoothly. As trusted relationships were built, Ian, Elaine and their dog Bobbles would venture out into the community with their care worker, shopping and visiting coffee shops. They even had a weekend away in Brighton. They took these opportunities to create wonderful memories, taking lots of pictures, and share their stories with friends over social media. Staff trained to drive the mobility vehicle would take them further afield, and also to take Bobbles to the vets when needed!

As expected, throughout this time, there were frequent hospital admissions in the early days which saw our team follow Ian into hospital and continue on with the care. However, this was often challenged financially which caused a considerable amount of stress for all concerned. However, with the skill of the team and the support of the district nurses, the team managed to go three further years avoiding a hospital admission. When this was no longer avoidable in the latter part of Ian’s care, our staff’s presence on the ward  was no longer challenged and found to be of great benefit to Ian, the staff and the hospital team.

For the last four years, Ian’s condition  deteriorated and he was no longer able to access the community.  This did not stop his fun; he’d forever prank the care staff, buy them little gifts and spend time watching films and programmes with them, generally with Bobbles on his bed too. Ian did not live his life any less through being bed bound and would still make people laugh, and enjoy himself in the process. 

The decision to stop treatment

In the summer of 2022, Ian voiced to Elaine that he no longer wanted to continue with treatment. He was now at a point where his pain and discomfort was too much; he wanted to take control of his death. This was devastating news and took everyone a short while to accept. However, Ian been thinking about this for a while and had made meticulous plans for his funeral.

Ian was referred to the team at The Rowans Hospice to discuss his options. He was taken through the process, as were our staff. Ian understood that he could withdraw his consent to treatment at any time and remained at peace with his decision.  He was transferred to The Rowans when a bed became available and two days later, the planned withdrawal of treatment commenced. In this time, an incredible amount of visitors came and went, giving Ian and everyone a chance to say their goodbyes. It was tough for everyone,  but Ian remained at peace with his decision, and was ready to die. As he entered the last hours of his life, Ian was surrounded by the family and friends he wanted beside him, including Elaine and Bobbles.

What we learned

We spoke to Elaine after Ian’s death and she shared with us her thoughts. She realised that as devastated as she was when Ian first told her of his decision to end treatment that on reflection, Ian actually did this for her;  there would be no sudden death, no panicked telephone call telling Elaine that Ian had died and she would not get the chance to say goodbye. Ian had planned it so they could be together when his end came and avoid a sudden shock. 

It showed us that if death could be managed in this way, there would be fewer regrets and maybe the impact of the loss would be softened somehow, removing the guilt that people often torture themselves with i.e., ‘If only I had been there, done this, etc’; all natural thoughts in the grief process. Everybody got a chance to say goodbye, and Ian was able to plan his funeral with a Toy Story theme. He loved Woody, and it made for a very moving and personal celebration of his life.

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