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Stopping treatment

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marionchatterly
Guest
Stopping treatment
Posted on: April 27 2009, 01:34 pm

Hope this will be of interest

Marion
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Gus Cairns
Member
Posts: 257
Re: Stopping treatment
Reply #1 on: April 27 2009, 06:50 pm

Looks interesting, wish I was in Edinburgh!
Gus
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Ben Cromarty
Member
Posts: 451
Re: Stopping treatment
Reply #2 on: April 28 2009, 09:12 am

It would be useful to know the context of this....stopping medication for what reasons? I would be very grateful if anyone going would be so kind as to post some feedback about this, saying what was covered.

I can think of many bad reasons where people might be tempted or persuaded to stop treatment...there are also some good reasons. Without knowing the context, though, it is hard to comment on whether or not stopping treatment is a reasonable choice.
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Michael Marr
Full Member
Posts: 195
Re: Stopping treatment
Reply #3 on: May 19 2009, 07:38 am

This discussion is being offered to begin to address some of the issues faced by front line staff.  Difficult questions arise for those staff who find themselves supporting individuals who have made a decision to stop HIV medication.  Should support staff attempt to persuade people to change their minds or is their role simply to support individuals to make informed choices?  Some staff have questioned whether supporting people to stop medication is akin to assisting suicide.  What are the ethical issues?  This event will give an opportunity for some of the difficult questions to be raised and discussed in an appropriate way.

Marion Chatterley
Spiritual and Pastoral Care Co-ordinator
Waverley Care Milestone
113 Oxgangs Road North
Edinburgh
EH14  1EB

Tel: 0131 312 9957
        07771 982163
Fax: 0131 441 6989
Website: www.waverleycare.org

Waverley Care, Scottish charity number SC036500, is Scotland's leading charity providing care and support to people living with HIV and Hepatitis C. 
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Ben Cromarty
Member
Posts: 451
Re: Stopping treatment
Reply #4 on: May 19 2009, 09:49 am

...thanks for clarifying.

This is certainly a difficult area that perhaps needs exploring. Personally, I have already reasoned that if and when things get to a certain point - particularly with regard to mental function - then I would want to come off HIV meds, and I have left instructions to that effect in a "living will" (for what it's worth).

...but as you say, what are the wider implications for carers? Indeed, are there legal issues? But surely it is akin to cancer patients deciding to forgo chemo/surgery for better (if shorter) QoL?
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Paul Clift
Member
Posts: 467
Re: Stopping treatment
Reply #5 on: May 19 2009, 10:11 am

If anyone goes to this, would it be possible to post a summary of the main points here? Ben's point that "if and when things get to a certain point - particularly with regard to mental function - then I would want to come off HIV meds" is pretty much my position too, but clearly one that raises ethical - and possibly legal - issues for staff and carers.
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Ben Cromarty
Member
Posts: 451
Re: Stopping treatment
Reply #6 on: May 20 2009, 10:25 am

...what is the position with cancer patients who choose to come off chemo? Are there guidelines for carers/service providers in that area?
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marionchatterly
Guest
Re: Stopping treatment
Reply #7 on: May 22 2009, 02:15 pm

I think that there are different issues as well as some similarities - I hope that's one of the areas we'll be able to discuss on Thursday.  Some of the people I see struggle to take treatment because of denial or self stigma or mixed feelings about whether living is worthwhile or not (HIV related depression or....?).
The GMC has a very good consultation at the moment on palliative care guidelines - worth looking at.

I'll try to report back after the event.

Marion Chatterley
Waverley Care
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marionchatterly
Guest
Re: Stopping treatment
Reply #8 on: June 1 2009, 09:01 am

Report on discussion:

David Oxenham introduced us to the ethical framework within which all medical decisions should be made, namely:

Autonomy – the absolute right of a ‘competent’ patient to self determine and to be given sufficient information that they can give informed consent

Beneficence – the requirement to do good – to ensure that medical decisions are in the best interests of the patient rather than other people or society as a whole

Non maleficence – the requirement not to do harm, either deliberately or by omission

Justice – the requirement to consider both ethical and legal issues.  Often described as a form of fairness

There was discussion about the weighting that can be given at different times to each of these areas and the fact that significant others may have different wishes or ideas than the patient or the doctor.  The emphasis was on working with people but being clear that the patient should at all times be in control of the decision making process unless they have lost capacity in which case decisions should be made that are thought to be in line with what the person has already stated as intention.  Advance directives were seen as useful so long as they are kept updated.   

We also looked at a range of trajectories that relate to the ways that life might end.  There are 4: instant eg fatal heart attack; illness with a quick and obvious decline eg many cancers; illness followed by a series of crises, each of which leaves the person slightly less well than they were before eg heart disease; slow and gradual decline eg motor neuron disease.  One pointer was the need to discuss wishes while the person is fully competent.  There are issues on each trajectory with finding the best time for those conversations and we tended to agree that we have fewer of those conversations in the HIV field at the moment. 

We explored the challenges that arise for support staff when people appear to be making contradictory decisions eg to stop HAART but to continue to take prophlaxis and agreed that there may be good reasons to behave in ways that might appear illogical but can serve the individual well. 

I certainly came away from the session with a renewed intention to initiate conversations, at appropriate times, on people’s end of life wishes.  I was reminded of the need to revisit these conversations each time something changes (obvious, I know, but not always easy to remember – I think that we tend to think that a decision has been made and get into a particular mind set and then can be a bit inflexible). 

Marion


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Paul Clift
Member
Posts: 467
Re: Stopping treatment
Reply #9 on: June 1 2009, 03:12 pm

Thank you Marion, really useful. And nice to see a recognition that what may appear illogical may well feel perfectly logical to the patient, and ought to be accepted as such.
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