Death and Dying

DEATH AND DYING

Method Combined MEQ-PBL method

AIMS  to raise trainees’ awareness of issues related to ‘death and the dying’  to help trainees identify their own learning needs in this area and help to meet them  to help trainees to reflect on personal issues regarding ‘death and the dying’

OBJECTIVES After this session, trainees should  be able to identify key points for communicating bad news effectively eg Kayes’ Model of Breaking Bad News  be able to deal with patients’ relatives and friends more effectively  be able to identify the different people involved in care of the dying and how to access them (teamworking)  know how to fill in a death certificate/cremation form  be able to understand the principles of a ‘good death’ and integrate it into their practice

ONLY HAND OUT ONE PAGE AT A TIME and…….

ONLY WHEN THE PREVIOUS PAGE HAS BEEN FULLY EXPLORED. DEATH AND DYING: PAGE 1

Roland is a 31 year old man who has advanced osteosarcoma. The primary tumour was in his pelvis and was inoperable; he had radiotherapy and chemotherapy but now has extensive lung secondaries and is no longer having active treatment.

His partner, Michael, brings him to see you because he feels he has deteriorated significantly. Roland is complaining of great difficulty with eating and drinking, and is very short of breath.

Michael is finding it increasingly difficult to look after him at home.

Possible Learning Issues

Doctor feelings Need to explore own attitudes to  dealing with a gay couple  dying patient

Clinical Issues  Osteosarcoma  Symptom control in terminal illness  Possible referrals  Hospital /Hospice – referral criteria  Palliative Care Team - what is it, who’s in it? - criteria for referral  Care at home - how to obtain maximal home nursing support, ‘continuing care funding’ and forms

Issues for Roland What might he want at this stage?

Issues with partner (Michael) Carer stress Support available What might he want at this stage? DEATH AND DYING: PAGE 2

During the consultation, Roland says that he has discussed end of life issues extensively with Michael and he wishes to remain at home for as long as possible. He is also keen that no extreme measures are taken to keep him alive.

On leaving, Michael mentions that although Roland is not in pain, he knows he is scared. He says he wonders how he is going to survive without Roland and feels angry that his ‘future has been taken away from him’.

Possible learning issues

Issues regarding Roland  Dilemma - respecting Roland’s wishes vs reality of keeping him at home  Roland’s emotional issues o why so scared? – e g the dying process?, loss of his future life? life after death issues?, guilt at leaving Michael? o Kubler-Ross phases of reacting to bad news o Spiritual issues & how to tackle them eg religion, belief in God, does he see his illness as a punishment?, views on life after death. Even if Roland does not believe in any formal religion he may have very strong spiritual issues eg reflecting on the meaning of life, the nature of interpersonal relationships, the legacy he wishes to leave behind, the exploration of unrealised goals, resolving any outstanding issues

Issues regarding Michael  Does Michael feel the same way as Roland about his dying at home and about ‘no active treatment’?  Michael’s emotional Issues o ? Anger phase of reaction o Dealing with Michael’s anger (avoid confrontation, facilitate discussion, allow to ventilate feelings eg what does Roland’s death mean for him?, is he torn between letting go of Roland yet trying to respect his wishes?) o Spirituality  Sources of help for Michael – support groups, social worker, mental health team, counsellor

Ethical issues Advance Directives o what are they? o what legal status do they have? o how do you assess them? o how often should they be reviewed? o who needs to know about them and how can we ensure they do? DEATH AND DYING: PAGE 3

You ask Roland and Michael about Roland’s family – his father is dead but his mother is still alive; he has 3 brothers and 1 sister.

One brother lives locally and has visited a couple of times but all the others live several counties away. The local brother is aware of Timothy’s illness, but perhaps not of his proximity to death. He has said he will tell the rest of the family. Roland’s mother is a devout Roman Catholic and only wishes he would see a Catholic priest, make confession, and receive the sacrament of the sick.

Michael is bitter towards the family for their lack of support to Roland.

Possible learning issues

Dysfunctional family dynamics  How to ask about it tactfully o why don’t family visit? (is it them, Roland, Michael?) - religious differences? homophobia? o Would Roland like to see the family (despite Michael’s views)?  Approaching the family o who – you? Who else might help? o How to calm ruffled waters?  The importance of this o The estrangement may be painful for everybody in the family, not just Roland o If issues not sorted now, they’ll remain after Roland’s death

Dealing with Michael Who/how to help him deal with his negative feelings and develop a more constructive attitude in the difficult situation

Doctor Issues  How far should you get involved?  What will help you remain neutral/deal with all the strong feelings around you

Who else could help?  The Pastoral Services Worker - someone experienced in accompanying terminally ill patients and their families but not identified with a specific religion  Other sources of help? One way forward : encouraging discussion of family memories and good times in the past. It will be important for Michael to see Tim at peace with this very significant but troubled part of his life. DEATH AND DYING: PAGE 4

You manage to arrange maximal home nursing support. The Palliative Care team are involved and Roland is otherwise comfortable.

A few days later, while you are on evening duty for the OOH service, you are requested to do a home visit for Roland. On arrival Roland has deteriorated rapidly. Michael is at his side.

PC : Agitated, confused, breathing laboured and not very responsive.

(?Role play………..Michael and doctor – breaking bad news : re Roland is dying)

Clinical Issues  Recognising the terminal phase of dying and terminal agitation  Managing the terminal phase of dying eg morphine syringe drivers, use of other drugs to make Tim comfortable

Organisational Issues  Continuity of care – supposing you hadn’t been on duty for OOH service o How would the OOH team know about the situation? o Might you have given Roland and Michael your mobile no?  Whom can you call OOH for help with palliation & syringe drivers (DNs, palliative care team, ?admit/call hospice/hospital???)

Communication Issues Breaking Bad News (to Michael) ie Roland is dying (Kaye’s 10 point model of Breaking Bad News) DEATH AND DYING: PAGE 5

The following morning, you receive a message that Roland has just died. You visit to confirm death. Michael tells you about the plans for the funeral which includes cremation. He is in tears, is still bitter about events. He tells you he does not intend to invite the family.

Confirming death  How would you confirm death?  What would you write in the notes?  What happens next?  What if you are an OOH doc who doesn’t know Roland?

Death certificates and cremation forms  Who can fill in the death certificate?  What happens if the doctor doesn’t know the patient before they died?  What happens to the death cert after it’s been filled in?  Who can fill in the crem form?  What information do you need to fill it in?  What would you write in Roland’s case?  How do you get a doctor to do the Part 2 form in GP?  What happens to the crem form after it’s been filled in

Supporting the bereaved person/family  Practical – e g the DWP leaflet  Emotional o Empathy, support, allow to ventilate feelings o ? referral to bereavement counsellor (tho’ Michael might not be your patient) o discussion re the family – can you help re the funeral? Consider mediation between Michael & Roland’s family (by you or someone else, e g pastoral services worker); perhaps 2 ceremonies, a Catholic funeral with the family and a memorial event/celebration of Roland’s life with his friendship network

Ethical issues  Can Michael be legally considered as next of kin?  Has he the right to stop Roland’s family coming to the funeral/  Where could you get advice about this?

Doctor issues  think of your own feelings – e g o you may have developed a close professional relationship with this couple o the issues may have echoes in your own life experience o Your own religious and ethical beliefs may have been challenged by this case  How would you ‘housekeep’ yourself? Further information Psychosocial support for dying people – what can Primary Care Trusts do? - a discussion paper from the Kings’ Fund, accessible from their website http://www.kingsfund.org.uk