1 How Nurses can shape end of life care: Research and PracticeDr Tracy Long-Sutehall PhD, C.Psychol Associate Professor Faculty of Health Sciences University of Southampton, UK
2 Prague Charter (2013) Governments must develop health policies that address the needs of patients with life-limiting or terminal illnesses. Governments must develop comprehensive health care policies which guarantee that care can be provided throughout the course of a lifetime, from birth to death. Governments must ensure that the laws provide support to the relatives of patients during the time of care and after the time of death Use divider pages to break up your presentation into logical sections and to provide a visual break for the viewer. The title can be one or two lines long.
3 EoLC trajectory in ICU Critical junctureCRITICAL INTERVENTION END OF LIFE CARE Hours/days/weeks Minutes/hours Critical juncture ADMISSION WITH HOPE OF RECOVERY Full & intensive interventions Time for declaration (patient) Time for adjustment (family) TRANSITION FROM INTERVENTION TO END OF LIFE CARE Making a diagnosis of dying Pushing the door open; managing end of life consensus Facilitating family grieving A CONTROLLED DEATH Ending the suffering for all; the ultimate palliation Letting nature take its course Saying goodbye
4 Differing dying trajectoriesThe most usual trajectory for CICU and GICU was: acute admission following critical injury [illness] or planned surgical operation followed by insidious deterioration with little or no response to interventions over a relatively short time line [hours], or, a more protracted process of one step forward and one step back, with pauses when the patient is not moving in either direction [days or weeks].
5 Differing dying trajectories – cont.NICU: similar to CICU and GICU, but also: trajectory whereby the patient is relatively stable, but has sustained a brain injury leading to the diagnosis of brain stem death [in this situation the family members would be approached about potential organ donation before any discussions regarding withdrawal of treatment were initiated]. If the patient was to become an organ donor no further discussions regarding withdrawal of treatment would take place.
6 Shaping Death: Assessing Facilitating Coordinating Operationalising Patient/ Family need Communication Multiple teams Processes Family dynamic/ responses Family access Family requests Ongoing care Responsive care Complex care Patient focussed care Timing Rites and rituals Professional responsibilities/Policy/Clinical Guidelines/Unit philosophy Personal values/attitudes: what sort of death I would want for my family member
7 Professional aims “Professionally it would be determining that all the correct teams involved have had their input in order to come to that decision about further treatment being futile. Professionally that the family are aware of everything that has gone on and that it is clear to them the procedures from here, [that] they have established next of kin. That there are no advance directives, anything like that in place and then going on from there to discuss with our organ donation team, even though they [family] might not wish to donate anything, that there is support for the family as well so just discussing with them” [13:12 (23:23)]
8 Communication style: Negotiating“From my point of view I consider that you are the go-between really. You are constantly reassessing the family and you’re assessing your doctor as well really and if you have concerns about where the treatment is going, and you know what the family’s feelings are, then you do kind of say to the doctor, well I don’t know what your thoughts are, or what your plans are, but the family have said this, that, and the other” [Nurse CICU) .
9 Communication style: primingI would explain everything that was going to happen including what to expect kind of coughing that sort of thing just to expect certain unpleasant side of death really because I think they need to if they want to be there they need to know what to expect and it is not always kind of nice but I think they should be made aware of something then you can cope with it better (Nurse GICU).
10 Communication style: confirming“Before commencing withdrawal processes I would discuss with the family about did they understand everything, where they ready for this, how they wanted to sort of go about things, did they need more time was there any family members that they needed to come down, did they want anything else, did they want a Chaplin or any basically is there anything else that we could do to make it kind of best a situation as possible really and then just ask them whether they want to be with the patient” [Nurse ].
11 Functions of communicationPriming the trajectory of progress Managing expectations Negotiating a dying trajectory that nurses perceive to be desirable and appropriate to the patient and family
12 A final word “Sustaining life is a positive blessing and giving a dignified death is a positive blessing and you work your socks off to ensure both are done because that is what the family remembers not the days leading up to it, but those final moments,” [2:50 (245:246)].
13 Conclusions Nurses are pivotal in reshaping withdrawal of treatment, which lacks the concept of care, into end of life care, which articulates it. Communication styles are aimed at developing effective therapeutic relationships that inform and shape end of life care Whilst professional roles and responsibilities inform actions that shape end of life care personal values and views often take priority
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