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IMPROVING PALLIATIVE & END OF LIFE CARE

Sandra Campbell (FRCN)Macmillan Nurse Consultant Cancer & Palliative Care NHS Forth ValleyNursing in Practice EventSEC Glasgow 3 March 2020

Excellent person centered PEOLC requires…

The right care by the right team at the right time, to the right standard

with the right outcome and in the right place…

Agenda…

▪ Identification of need and care coordination are critical in good end of life care

▪ Goal setting about what is important to the person and those close to him/ her

▪ Sensitive communication crucial

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Global perspective...inequitable care

Global health leaders call for greater investment in nurses and midwives13 November, 2018 By Gemma Mitchell

Increased investment in nursing key to achieving health for all

Coco and COMMUNICATION IN PEOLC

Coco – Mexican day of the dead

Communication breakdown

Importance of family

Needs of elderly- Mama Coco with dementia

Grief

If only w e could see into the future....

To Absent Friends...

Consequences of poor communication

Need for support

Family adapting (Gawande 2014)

Grief is normal

Need for honesty

ACP!!!!!!!

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What is the current situation?

57,000 people die every year

46,000 will need some form of palliative care

11,000 don’t get the palliative care they need

Marie Curie briefing: Inequalities in palliative care 2017

Reflecting on Palliative Care…

▪ Really good progress

Hospice movement – Shift in thinking…

Living and Dying Well (SG 2008)

LCP…

National Guidance on Caring for people in

the last days and hours of life (SG 2014)

Strategic Framework for Action on

Palliative and End of Life Care (SG 2015)

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Reflection and relating evidence and policy to practice…

▪ Almost 57 000 deaths per year

▪ Approximately 1/3 due to cancer▪ Approximately 50% in hospital

▪ 29.8% of people in an acute hospital will die within a year (Clark et al 2014)

▪ Increasing numbers dying in care homes▪ The surprise question should be used in

patients with a diagnosis of cancer (White et al 2017)

▪ Days spent in hospital in last 6 months of life are measured

▪ Demand for end of life care in community will increase by 60% by 2040 (Finucane et al 2019)

• Impact of illness

• Living with uncertainty

• Prognosis

Being Mortal: Atul Gawande 2014

Early intervention and conversations supports a good death at home (Pooler et al 2018)

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Policy context

Informative, timely and sensitive communication is an essential component of each individual person’s care

Significant decisions about a person’s care, including diagnosing dying, are made on the basis of multi-disciplinary discussion

Each individual person’s physical, psychological, social and spiritual needs are recognised and addressed as far as is possible

Consideration is given to the wellbeing of relatives or carers attending the person.

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›Early identification

›Assessment and Care Planning

›Collaborative working

›Communication

Palliative and End of Life Care Aims (SG 2015)

▪ Access to palliative and end of life care is available to all who can benefit from it, regardless of age, gender, diagnosis, social group or location.

▪ People, their families and carers have timely and focussed conversations with appropriately skilled professionals to plan their care and support towards the end of life, and to ensure this accords with their needs and preferences.

▪ Communities, groups and organisations of many kinds understand the importance of good palliative and end of life care to the well-being of society.

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DefinitionsPalliative Care…“Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”

End of life care… “Care of the person living through the dying phase of life - is that part of palliative care which should follow from the recognition that a person is entering the process of dying, and there is a high likelihood of them dying over the next few hours, days or weeks, whether or not he or she is already in receipt of palliative care.”

(SG2015)

Ten commitments...

Vision: By 2021, everyone in Scotland who needs palliative care will have access to it.

1. Improvements in the identification and care co-ordination of those who can benefit from PEOLC.

2. Provide strategic commissioning guidance on palliative and end of life care to HSCPs.

3. Support the development of a new PEOLC educational framework.

4. Support and promote the further development of holistic palliative care for the 0-25 years age group.

5. Support the establishment of the Scottish Research Forum for PEOLC

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Ten commitments...(CONTD.)

6. Support greater public and personal discussion of bereavement, death, dying and care at the end of life.

7. Seek to ensure that future requirements of e-Health systems support the effective sharing of ACP.

8. Support clinical and health economic evaluations of PEOLC models.

9. Support improvements in the collection, analysis, interpretation and dissemination of data and evidence relating to needs, provision, activity, indicators and outcomes in respect of PEOLC.

10. Establish a new National Implementation Support Group to support the implementation of improvement actions.

Identification of need

Assessment

Physical

Psychological

Social

Spiritual

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Competent practitioner

Effective tool

Optimum outcome for patient and

family

Using tools...

Care co-ordination

Care co-ordination in palliative and end of life care is the proactive, inter-connected and organised activity between the various people supporting someone with a life-limiting progressive illness.

Key skills required to co-ordinate care are the ability to listen and communicate well.

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Care Co-ordination in PEOLC

▪ WHAT is care coordination in PEOLC?

▪ WHY is it important?

▪ WHEN should it be done?

▪ WHO by?

▪ WHERE?

▪ HOW?

▪ Communication about planning of care

▪ To obtain optimum outcome

▪ Commence at point of

identification of need/Transitions

▪ Begins with whoever identifies need

▪ Central point/ may vary

▪ Through good communication/conversations and systems

Care coordination

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Collaboration

Common language

Role clarity

Managing effectiveness

The 4 Ds…

▪ Do it…

▪ Delegate it…

▪ Defer it…

▪ Drop it! (Allan in Levitin (2015, p71)

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Patient dignity question (PDQ)

What do I need to know about you as a person to give you the best care possible?

Chochinov et al 2005

Research in Scotland showed the PDQ has potential to patients/ carers

perceptions of care (Johnston et al 2015)

Compassion...

Noticing... Feeling... Responding

Kings Fund

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Being Mortal (Gawande 2014)

▪ What is your understanding of where you are in your illness?

▪ What are your fears or worries for the future?

▪ What are your goals and priorities?

▪ What outcomes are acceptable to you- what are you willing to sacrifice or not?

▪ What would a good day look like?

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Communication: building trust and ensuring honesty

• Increased survival but changing trajectories and increased need to support people with cancer ( Lobb et al 2015)

• Holistic assessment of need can support meeting previously meetable unmet need (Scheppengen 2011, Moghaddam et al 2016)

• A palliative care approach should improve end of life care and help prevent futile treatments ( Zheng et al 2016)

Honesty...

“Truth Hurts but deceit hurts more”

(Fallowfield, Jenkins and Beveridge 2002)

“I think the best physician is the one who has the providence to tell to the patients according to his knowledge the present situation, what has happened before, and what is going to happen in the future”

(Hippocrates)

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Evidence for Kindness and Compassion?

▪ Kindness, generosity and forgiveness can be seen as compassionate behaviours (Gilbert 2009)

▪ Begley (2009) argues that compassion can be used to “train” the brain to think in a different and more positive way

▪ even though the interactions in which the giving and accepting of help and kindness happen are everyday and mundane, they have great emotional significance (Allen et al 2015 , Anderson et al 2015)

▪ there is a growing body of evidence that consistently shows that positive relationships and kindness are at the very heart of our wellbeing

https://www.carnegieuktrust.org.uk/project/kinder-communities/

EVIDENCE...?

▪ Decision tools can improve patient knowledge and awareness of treatment choices and improve awareness ACP documentation (Austin et al (2015)

▪ The assumption should not always be made that people want to die at home (Hoare et al 2015)

▪ Important to identify frail elderly to inform, decision making in cancer care and improve quality of life (Kirkhus et al 2019)

▪ Paramedics have an increasingly valuable role in palliative care ( Lord et al 2019)

▪ Advance care planning improves outcomes for people with dementia (Goosens2019 )

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Gaps...?

▪ Palliative care for people who are homeless?

▪ Reduced number of RNs in Care Homes?

▪ Care provision in rural areas?

Other developments ...

▪ ECHO

▪ End of life care in Prisons

▪ Macmillan Pathway for people with Learning Disabilities

▪ SAS & Macmillan project

▪ Building on the Best – Macmillan and SPPC Project in Acute Hospitals

Hospital network

Digital platform- ReSPECT testing this

Confirmation of Death Framework

Changes to Terminal Illness Benefits

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The dots need to be joined up to see the whole picture....

IN SUMMARY…

• Identification of need and Care Coordination fundamental • Early conversations with patient and those important to

him/ her• Communication on all levels critical to success • Collaborative working with all teams in health and social

care essential• Appropriate use of Data• Competent, supported workforce

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Its not what you do its how you do it...

Its not what you see, its how you look at it...

It’s not the life you live, it’s how you live it.

And finally...

THANKYOU!!!

https://www.youtube.com/redirect?v=NAlnRHicgWs&event=video_description&redir_token=nbn6ScX57KG5B3CBkLCfuYNymI58MTU4Mjk4NDcwMkAxNTgyODk4MzAy&q=http%3A%2F%2Fzdoggmd.com%2Faint-the-way-to-die%2F

Aint no way to die...

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References & further reading Allen, M., Spandler, H., Prendergast, Y. and Froggett, L. (2015) Landscapes of helping: kindliness in neighbourhoods and communities. York: Joseph Rowntree Foundation. https://www. jrf.org.uk/report/landscapes-helping-kindlinessneighbourhoods-and-communities*

Anderson, S., Brownlie, J. and Milne, E.J. (2015a) The Liveable Lives study: Understanding everyday help and support. York: Joseph Rowntree Foundation. https://www.jrf.org.uk/report/ understanding-everyday-help-and-support*

Austin CA, Mohottige D, Sudore RL, Smith AK and Hanson LC. Tools to Promote Shared Decision Making in Serious Illness: A Systematic Review. JAMA internal medicine. 2015;175(7):1213-21.

Bailey, SJ, Cogle, K (2018) Talking about dying: How to begin honest conversations about what lies ahead [Online] Royal College of Physicians, Available at http://bit.ly/2CMnbdV

Chochinov H et al (2005) Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life Journal of Clinical Oncology 23 24 pp 5520-5525Clarke D et a (2014) Imminence of death among hospital inpatients: Prevalent cohort study Palliative Medicine

28(6) 474 –479

Fallowfield L & Jenkins V (2004) Communicating sad, bad, and difficult news in medicine. The Lancet • Vol 363 • January 24, 2004 • www.thelancet.com

Finucane A et al (2019) The impact of population ageing on end of life care in Scotland: projections of place of death and recommendations for future service provision BMC Palliative Care 18 112 pp2-11

Gawande A (2014) Being Mortal USA/

References & further reading Goosens B et al (2019) Improving shared decision making in advance care planning: Implementation of a cluster randomised staff intervention in dementia care Patient Education and Counseling (2019) https://doi.org/10.1016/j.pec.2019.11024

Good Life, Good Death, Good Griefhttps://www.goodlifedeathgrief.org.uk/content/acp-

Hoare S, Morris ZS, Kelly MP, Kuhn I and Barclay S. Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death. PloS one. 2015;10(11):e0142723.Johnston B & Gaffney M Eet al (2015) The person behind the patient : A feasibility study using the PDQ for patients with palliative care needs International Journal of Palliative Nursing 21 2 Doi: https://doi.org/10.12968/ijpn.2015.21.2.71

Kirhus L & Benth JS et al (2019) frailty identified by geriatric assessment is associated with poor functioning, high symptom burden and increased risk of physical decline in older cancer patients: Prospective observational study Palliative Medicine 33 3 pp312-322

Lets talk about it : Dying Mattershttps://drive.google.com/file/d/0B3vmSe1_duxIU2M4WFVYd1BRNjQ/view

Lord B & Andrew E et al (2019) Palliative care in paramedic practice: A retrospective cohort Palliative Nmedicine 33 2 pp1-7

Scheppengen C et al (2011) Does screening for distress efficiently uncover meetable unmet needs in cancer patients? Psycho-oncology 20 6

Sinuff Tasnim, et al. "Improving end-of-life communication and decision making: the development of a conceptual framework and quality indicators." Journal of pain and symptom management 49.6 (2015): 1070-1080.

White N et al (2017) How accurate is the “surprise question” in identifying patients at the end of life. A systematic review and meta analysis BMC Medicine 2017; 15 (1) :139

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