Professor d robin taylor Consultant physician nhs Lanarkshire Honorary clinical fellow university of Edinburgh I want a good death for myself if that is possible When my time comes I want to have the courage to acknowledge that dying is for me and not someone else I want to be reco ID: 932366
Download Presentation The PPT/PDF document "The Role of Spiritual Care in ..." is the property of its rightful owner. Permission is granted to download and print the materials on this web site for personal, non-commercial use only, and to display it on your personal computer provided you do not modify the materials and that you retain all copyright notices contained in the materials. By downloading content from our website, you accept the terms of this agreement.
Slide1
The Role of Spiritual Care in Hospital Anticipatory Care Planning
Professor d robin
taylor
Consultant physician,
nhs
Lanarkshire
Honorary clinical fellow, university of Edinburgh
Slide2“I want a good death for myself, if that is possible. When my time comes, I want to have the courage to acknowledge that dying is for me and not someone else. I want to be reconciled to disabling decay or an acute catastrophic illness, and to handle the suffering that these bring with dignity, if that is possible.
When dying is just over the horizon, I want to be able to decline what I perceive to be too much treatment when the time comes for that choice to be made. I want to be able to talk about the future easily with one or two professionals whom I respect and trust, and with family and friends whom I love and who love me.
As the embers of my life grow cold, my fears disturb me, and the hopes I have for life beyond this life figure more and more in my thinking, I do not want to be distracted and agitated because over-energetic doctors are vainly intent on keeping my body alive. Above all, I do not want to be alone”
Slide3Context: the process of dying
Physical
: acute illnesses against a background of irreversible decline in health.
Functional: diminishing performance status and increasing levels of dependence.
Spiritual/existential: changes in the perception of self and the person’s sense of future.
Slide4The diagnosis of dying
Prognostic conversations
… the keys to good end-of-life care
Slide5“What does the future hold?”
The meaning of prognosis
Slide6Prognostic conversations
Discussing prognosis is an
ethical responsibility for all clinicians, even more so when the patient has a life-limiting condition.
Slide7Slide8Elizabeth Kubler-Ross
Slide9“The Scream”, Edvard Munch, 1893
Slide10Dying is a transition
Monica Renz. Dying is a transition.
New York. Columbia University Press. 2015
Slide11Dying is a transition
Loss of the deeper self (the ego) in the course of physical disintegration over a period of days, weeks or months
Repeated encounters with primordial fear in the context of death’s inevitability and mystery: - loss of control - of being abandoned - of being overwhelmed, consumed - of being annihilated
Grief reaction (à la Kubler-Ross): the varied emotional response within this transition
Not a linear process, oscillatoryArrival at a place of altered awareness where time, place and person are not what they once were; there is peace and dignity because the self has changed.
Monica Renz. Dying is a transition.
New York. Columbia University Press. 2015
Slide12Hope
“Hope is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out”
Vaclav Havel Playwright and President of the Czech Republic, 1993-2003
Slide13Concerning my experience of dying, I hope that …
Things will not get out of control
I will not have to endure unnecessary sufferingdue to harmful or futile medical treatmentsdue to the neglect of palliative treatmentsbecause the dying process is being artificially extendedThat someone will talk to me sensitively and meaningfully, and do it more than onceThat my wishes will be discussed, respected and fulfilled That I will not die alone
Slide14Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer
N = 200:
Patients with advanced cancer (estimated survival 2 years or less)Intervention: Making your wishes known ACP. Randomised controls.Outcomes: Hopefulness – Herth Hope Index Hopelessness – Beck Hopelessness Scale Anxiety – State Trait Anxiety InventoryResult: No reduction in hopefulness or increase in hopelessness or anxiety in intervention groupConclusion:
Engaging in ACP increases knowledge without diminishing hope
Green et al. J. Pain and Symptom Management 2015: 49: 1088-96
Slide15Slide16Slide17Terror management theory
“The fear of death is an innate driver in all of us and much of what humans do is subliminally energised by the desire to preserve ourselves”
Ernest Becker, 1924-74 cultural anthropologist
Slide18The Hospital ACP
Slide19Slide20Treatment Escalation / Limitation Plan
- the Hospital ACP
Designed (not just for patients who are dying): To improve management of acute episodes of deterioration, perhaps in the context of an end-of-life trajectory.To provide continuity of care
and good communication. To provide information about, as well as appropriate limitations to, interventions which are likely to be
futile, burdensome and/or contrary to the patient’s wishes.To MINIMISE HARMS due to overtreatment or undertreatment.To facilitate and be guided by
DISCUSSIONS WITH PATIENT
and family or POA.
Slide21What is meant by non-beneficial treatment?
Goal(s) of treatment is(are) not defined or are unattainable Little or no meaningful benefit Harms: burdensome to patient / adverse effects
Palliative treatments are neglected Illusions of potential recovery, other psychological harm
Delayed bereavement for next of kin Wasteful of resources
Slide22How does harm happen?
Failure to recognize illness trajectory including the possibility of dying
Organ-focused curative intent continues even when decline is irreversible or death is inevitable (OVER-TREATMENT)Failure to provide symptomatic / supportive treatments when required at end of life (UNDER-TREATMENT)All factors may aggregate and contribute to a “Bad Death” if / when that time comes
Slide23Background issue:
problems with DNACPR
Misunderstandings: - that success rate for CPR is high (in fact it’s only 18% overall) - DNACPR perceived to be a surrogate for withholding other treatmentsDiscussions about DNACPR in isolation or out of context are difficult and distressing to patients, relatives and clinicians.CPR is about one intervention only; many others are much more relevant.
Slide24The impact of a treatment escalation / limitation plan on non-beneficial interventions and harms in patients during their last admission before in-hospital death, using the Structured Judgment Review Method.
Calvin J. Lightbody, Jonathan N. Campbell, G. Peter Herbison, Heather K. Osborne, Alice Radley, D. Robin Taylor. BMJ Open, 2018.
Slide25Category
Description of ‘problem’
1
Assessment, investigation or diagnosis
2
Medication / IV fluids / electrolytes / oxygen
3
Treatment and management plan
4
Palliative or end-of-life care
5
Operation/invasive procedure
6
Clinical monitoring
7
Resuscitation following a cardiac or respiratory arrest
8
Any other type not fitting into the categories above
Structured Judgment Review Method, Royal College of Physicians
Hutchinson et al., BMJ Quality and Safety. 2013.
The Structured Judgement Review Method
(Royal College of Physicians, London)
Slide26The Structured Judgement Review Method
(example)
1A. Problem in assessment, investigation or diagnosis
(e.g. arterial blood gas sampling or CT scans that did not change management)
:
Yes
(1)
No (2)
1A
☐
1B. Was the problem associated with non-beneficial intervention / treatment?
Yes (1) No (2) Possibly (3)
1B
☐
1C. Did the problem lead to harm?
Yes (1) No (2) Possibly (3)
1C
☐
Comments
Slide27Clinical ‘problems’, NBIs and harms
P<0.001 for all within group comparisons
N = 155
N = 113
N = 21
Lightbody et al., BMJ Open, 2018, In press
Slide28Description of clinical ‘problem’ as per Structured Judgment Review
All patients
n=289
HACP and DNACPR n=155
DNACPR only
n=113
Neither HACP nor DNACPR
n=21
1
Assessment, investigation or diagnosis
12.5
6.7
25.2
34.8
2
Medication / IV fluids / electrolytes / oxygen
19.5
12.6
33.9
58.0
3
Treatment and management plan
21.3
11.5
40.0
92.8
4
Palliative or end-of-life care
15.8
7.8
33.9
34.8
5
Operation/invasive procedure
2.8
1.1
4.4
34.8
6
Clinical monitoring
4.5
2.2
8.7
23.2
7
Resuscitation following a cardiac or respiratory arrest
2.8
0.4
4.3
58.0
8
Any other type not fitting the categories above
5.0
3.3
8.7
11.6
Rate per 1000 patient days
Lightbody et al., BMJ Open, 2018.
Slide29Slide30Moral distress
Slide31“Clinging on” vs “Letting go”
Slide32Slide33Thank you