The NHS End of Life Care Strategy, out today, calls for greater training for social care professionals serving people with terminal illnesses. A key area identified as in need of improvement is communicating with service users about "end of life issues". There are so many questions that arise but in such a difficult and often sad time in people's lives, how do you ask them with sensitivity?

For example, questions could include:

Have you made a will?

What are your treatment preferences if your condition deteriorates?

Would you like your organs to be donated?

Unfortunately I can't get the link to work.

Seems to be working for me. I did a bit of training in the area and we are encouraged to talk to service users about advance care directives and wills. I've generally found that a direct approach is best. I think its unfortunate that a stigma surrounds discussion of death. In a lot of ways, I've found that people are actually very open to discussing it and often welcome it. 

If that isn't the case as happens in some situations, you find out soon enough. Also as a part of making any kind of residential placement, these issues have to be discussed as there is an expectation by CSCI that a care plan in the home will specify preferred funeral arrangements in particular. 

 Training is useful because we still need to challenge our own perceptions of death and fear of death. 

If I were to advise Skills for Care (and i am inabsolutely no position to do so as I'm sure people with a lot more experience than me are involved there!) I'd say that the important thing is for the practitioner to be able to discuss death honestly and openly without euphemism or trying to skirt around the issue. 

I would say that it can take training to develop this confidence but having a discussion about death with someone can enrich the therapeutic relationship. It just has to be done with sensitivity. 

It is also an area where perceptions of religion and spirituality and different cultural attitudes needs to be extensively considered - as these rituals of life and death are enormously important culturally. 

Hi

At the residential home which I manage issues around death and dying are discussed as part of the care planning process. I would agree that the issues have to be dealt with in a sensitive way which takes in to account the service users wishes. It is obviously more difficult if the service user has no perception or understanding of death and the issues around it.

I have recently had a situation where a service user who has always been in good health was diagnosed with terminal cancer (no treatment possible). This lady has been given only weeks or months to live. This ladies understanding of what is happening to her is very limited due to learning disabilites. As a staff team we discussed the pros and cons of trying to explain to the lady what the prognosis for her condition was. It was felt that to tell her would cause immense distress and upset and this would have a major effect on her quality of life during the time which she had left.

We also used the mental capacity act and completed a best interests assessment to show how we had reached the decision not to tell her the full details of her prognosis. The service users family and medical professionals who are involved in her care are in full agreement with what was decided.

It is difficult because you could argue that as an adult she has a right to know what is happening to her and how little time she may have left but I think this has to be balanced against the possible effects this information would have on her.

We are looking more at "advanced care plans" if people wish to be involved in completing them as part of their care plans. We have also assisted some service users to arrange their own funerals due to them expressing a wish to do so.

As you say we need to be open to individuals wishes and respond sensitively and professionaly but also not enforce our own perceptions of death and dying on to the service users who we care for

DonnyMan

Some things not to do (which I've seen):

A woman - a young woman - sitting with her brother (a distant relationship) and other people like me (at the time a Care Assistant) in a care planning meeting (on admission to a home)... The home manager asking lots of day to day questions like "what does Anne like to eat" and then without warning asking the brother "and do you want us to tell you if she dies?" She (the manager) said that they had once had a family complain because they didn't want to know anything about their relative (including of his death) so they'd implemented this question as a standard one. I so wish I'd had the courage to have said what I thought about this... It's perhaps a question worthy of some consideration, and sometimes (just maybe and perhaps) one worth asking - but how do we ever get to the point where such a huge question gets asked in such an offhand way, effectively in public, by someone showing less empathy than I'd expect to see when taking a car to a garage? 

A  woman - who lived in a group home - having her sexual/love partner being taken to hospital with a serious and life threatening illness. She being supported to visit ONCE during a period of several weeks. He dying. She not being told FOR A WEEK!!! that he was dead because the home didn't want to upset her...