Death with dignity

A terminally ill single mother wants to die at home surrounded by her children. Can her medical and emotional needs be met?

Case study

The names of the service user and her family have been changed

SITUATION: Alison Saunders, 29, is a single parent of two young children, Noah, five, who has autistic traits and Lily-May, four. Her relationship with her partner (and both the children’s father) ended when she was pregnant with Lily-May. He took up a position abroad. He has not made contact since. A former child in care, Alison has no contact with her birth parents. Her sister who is a mature student at a nearby university helps out whenever she can with the children. Alison is a barrister.

PROBLEM: Alison was recently diagnosed with skin cancer but unfortunately too late for it to be treated: malignant melanoma is a dangerous, fast-growing cancer that spreads very quickly. She gave up her job and has remained at home to spend what time she can with her children. They realise that their mother is poorly but do not yet know that she will die and Alison is not sure whether to tell them or not. She stays mostly in bed, is very weak and requires professionally administered medication for pain control every three hours. However, this is only provided by a health care agency between 9am and midnight. She has expressed a preference to die at home but her medical team think it better, not least because of staff implications, that she should be placed in a hospice.

Practice Panel – Physical disabilities, Derbyshire

Panel responses
Annette Whittingham
This is an extremely sad situation for all members of Alison’s family. As care co-ordinator, there are many facets I would have to take into account when assessing Alison’s needs, as well as working very closely with colleagues from health who may possess very different views on service delivery from me.

People who are terminally ill still have aspirations, and in this case, Alison wants to remain at home, continue to have an active parenting role and may have a very clear view about the way in which she wishes to die.

I would be looking to establish a supportive and empathetic relationship with Alison and would be extremely sensitive to her circumstances. I would also appreciate my own limitations and acknowledge when to defer to the specialist skills of others as and when required. Due to the emotional issues involved I would seek formal support from my manager.

Alison needs to have confidence that her wishes will be respected especially as she will be feeling vulnerable and powerless.

Her medical team feel that she should be placed in a hospice. I would inform Alison of the possible care options such as care at home and the responsibilities of the health authority under continuing care regulations. I may also have a role in reassuring health professionals that care at home can be successful.

A local hospice in Derbyshire (Treetops) does not have any beds but offers day care, with a wide range of activities and complementary therapies, counselling and bereavement services, volunteer sitting and an excellent hospice at home service. Consequently, numbers of people who die within their own homes is high in the area in which it operates. This type of care may be
available to Alison and her family.

Alison, especially as a single parent, will be anxious about the future of her children. A counsellor may be able to advise and work together with Alison and her children in preparation for her death, employing such tools as memory boxes, stories and so on.

Overall, I would feel a tremendous responsibility in ensuring that Alison’s wishes are observed and that she receives an appropriate service.

Julie Heath
It is often in situations like these that the social and medical models of disability come into stark contrast. Over recent years especially, within social services departments, service users have been involved in consultation about service delivery, which has resulted in increased empowerment and more flexibility of provision. Service users have greater choice as indicated by the increase in the take-up of direct payments. People who have life threatening illnesses should be afforded the same opportunities, but all too often obstacles are put in their way.

Continuing care procedures are extremely complicated and managers from social services departments and health often get into protracted professional disagreement as to whether a person is assessed as level one, two or three. This will affect funding decisions and will have a terrific impact on the level of service a person can expect to receive.

Consultants and medical practitioners seem to have little understanding of the intricacies of continuing care, without realising the far-reaching effect upon families, and usually try to absolve themselves of any responsibility. There is also the complication of health funding not being able to purchase care provided by direct payments; this can lead to service users feeling disempowered at their time of greatest need and vulnerability.

From a social services perspective we would be able to offer Alison lots of choices and support. Her care manager would be expected to offer information, practical support with assisting Alison to maintain her parental responsibilities, advice about benefits, commission specialist assessments from other social services staff, liaise with other agencies, co-ordinate and monitor a comprehensive care package and care plan.

It is important for managers to recognise the stress that complex and challenging cases like theses can place on front-line staff. There will be a need for regular supervision, possibly mentoring from another, more detached, colleague; some hospices even offer support and counselling to workers involved in such cases.

While Alison’s situation is tragic, there is a real opportunity through comprehensive assessment, partnership working between agencies and Alison, to enable her to spend her remaining days with dignity.

User view
Alison is not alone in her wish to die at home. When asked, more than 75 per cent of people said that this is where they would choose to die if they had a terminal illness, but this happens in only 25 per cent of cases, writes Simon Heng.

As much as we owe a huge debt to the medical professionals for keeping us healthy, caring for us, curing our diseases (when they can) and reducing pain (when they can’t) we all need to recognise that there are times when people’s medical needs may be the most immediate, but not necessarily the most important to someone who is facing death.

A hospice may be where Alison may be most easily – and comfortably – cared for, but in the precious time she has left with her children, all three of them should be given the opportunity to spend as much time together in the security of their own home, particularly considering Noah’s autistic needs.

We can guess that Noah needs a familiar routine and environment, which would be missing if he was not living in his own home, with his mother. Lily-May would surely find this easier too.

If they aren’t already involved, Macmillan Cancer Relief could offer a range of help, advice and counselling for Alison and her care team. They might be able to help Alison decide what to tell her children, and the best way of doing this. They can advise the medical team on how best to use their resources to meet Alison’s wishes and her children’s needs, and inform them of other resources.

For example, Marie Curie Cancer Care provides palliative care for people with terminal cancer. Marie Curie nurses now care for about 50 per cent of all cancer patients to die at home; they also work day and night, free of charge.

I have faced life-threatening illness. I appreciate Alison’s concerns about explaining the situation to her children. I didn’t want to expose my children to the strange, frightening hospital environment, but just being in their company was some comfort to me.

I didn’t want them to think about my death, but I wanted them to know, at the very least, that I loved them, and that I wasn’t abandoning them. Whatever Alison decides to do, she would be helped by talking to someone with counselling skills who could help to clarify her thoughts in a non-directive way.

Although her children are probably her first concern, I hope that the person she talks to also reminds Alison that she has her own emotional needs.

Simon Heng is physically disabled and works on service user issues