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This presentation focuses on the family's experience in end-of-life care, the challenges of the clinical environment, and the discomfort of clinical staff. The research behind The Family's Voice will be discussed to determine if it improves care and prevents complaints. The presentation highlights the need for a paradigm shift towards involving families in care and provides recommendations for improving communication.
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The Development of the Family’s Voice Mel McEvoy Nurse Consultant in Cancer and Palliative Care We’re Passionate About Care Putting patients first Quality, safety and patient experience Transforming services to meet the health needs of future generations
The impact of death hits families the hardest We must be mindful of Cecily Saunders' words: ‘How people die remains in the memory of those who live on.’ End of Life Strategy (2008). The Family’s Voice attempts to create a positive memory but ….. General hospitals are not designed for people to die in.
What is the family's experience? When you walk into the room of a dying patient's family they are often suffering, going through loss and bereavement. Their world is changing quickly, they are in a place of uncertainty. They are often distressed and anxious. They will remember every word you say and the way you say it. These last few days / hours will be etched into their memory probably for the rest of their life….with you in them.
The main ideas of the presentation • Three areas of focus: the family’s experience; the clinical environment and clinical staff. • The research behind the Family’s Voice • Does it improve care and prevent complaints? • Tested across other health care settings • The staff’s voice: worse fears • Conclusions • Next Step My Voice
EoLC in the clinical setting is often fragmented. Biomedical approach permeates the culture. Acting in the Patient’s Best Interest Over worked staff Busy ward Anxious distressed families Ethical approach: Greater Good for the vast majority Duty of care to the patient Clinical Outcomes
Experience of Family • Families experience poor communication and witness poor symptom control during end of life care (Dying without dignity (2015). • Families experience a general lack of consideration in acute hospitals. There is often no assessment of what families really want and they are often expected to be the passive observers of care. (Pollock et al 2014; Pollock 2015 McNamara & Rosenwax 2010). • Even specialist nurses in Oncology and Palliative Care are significantly less comfortable talking to relatives than to patients. They struggle with what to say. (Peters et al 2013).
Experience of Families Based upon complaints the main themes of poor EoLC have been identified by NHSIQ (2013) as: • Lack of awareness of approaching death • Lack of communication and compassion • Inability to manage symptoms (including pain) • Poor hospital environment • Concerns around clinical care, and the withdrawal of treatment • Failures in fundamental care (Does the FV address these complaints?)
The Clinical Environment • It is a challenge to deliver EoLC in the context of a bio-medically focused clinical setting (Gagnon & Duggleby 2014). • Patients at the end of life prefer a clinical focus on comfort rather than life extension (Willard & Lucker 2006). • Patients would prefer to die in specialist units and hospices but will increasingly die in the acute setting (McCourt et al 2013).
Clinical staff • Nurses are uncomfortable communicating with dying people and their relatives (Bloomer et al 2013). • The age of staff and level of experience play a part in staff coping and providing better care; less experienced nurses often feel more apprehensive about care of the dying (Weigel et al 2007). • Staff are not adequately prepared for the care of dying patients and, in the absence of insight or training, they may use avoidance so that they can cope (Mak et al 2013). • Personal issues can play a part as nurses develop avoidance in their patterns of behaviour as a result of difficulties coping with the reality of death and suffering (De Aranjo et al 2004).
Including families is a collaborative approach Paradigm shift A holistic approach to dying Acting in the Patient’s Best Interest Duty of care to the patient Biomedical approach permeates the culture. Ethical approach: Greater Good for the vast majority Clinical Outcomes Involving families in care Early identification of dying patients This is a palliative care transition Pre-bereavement care of families
Research Question: ‘Can the Family’s Voice improve communication between family/friends and professional staff?‘ It started out as an issue about communication but has now become a constant challenge to clinical practice:We have opened the can of worms! If I write comments in the diary while my loved one is dying and also tell you my relationship to the patient; is this not an additional aspect of communication and therefore an improvement?
Summary of the research process • Phase 1 March- August 2010 in an acute NHS hospital. A prototype was designed and tested with a group of carers and ward staff. Endorsed by the trust’s patient advisory group. A pilot of 60 diaries were given out and 53% were returned with written comments. McEvoy et al (2012) • Phase 2 March 2011 to February 2012 a full year of research. 196 diaries were given out with 140 used and 58% (81) returned with written comments.Smith et al (2012)
Different stages of development • Phase 3 Between May 2012 and July 2013 the Centre for Health and Social Evaluation at Teesside University was commissioned to explore both family and staff involvement in the Family’s Voice The research aimed to measure the families and carers experience of filling in the diary and the perceptions of staff.Carlebach et Shucksmith (2014) • Phase 4 This research tested the diary out in nine health care organisations. Between December 13-January 15 with extension to some sites until August 15. 112 consented 62% were returned with written comments.
Integrated into Trust based quality measures • SPEQS - Staff, Patient Experience & Quality Standards • Safety, Quality and Infections Dashboard • Forms part of the Trust’s mandated Annual Quality Accounts/Report
Testing the Family’s Voice in other health care setting: a multi-centre study.
Multi-centred study- feedback from sites We want to carry on using the diaries after the research to not lose the good work. We have found the diary an excellent way of finding real time feedback for wards and one pilot ward has been able to show signs of improvement and received a trust award for innovation.
Multi-centred study- feedback from sites • Should the diaries be used outside of the research I am confident that the nursing staff could be trained to introduce the concept to families and the uptake would be greater. • We will continue to use the FV it can only enhance the quality of care provided involving families and friends. It is felt that it will improve the quality of care, reduce complaints and improve staff and relatives’ confidence in end of life care.
Multi-centre study- feedback from sites We found problems associated with the research process. The low uptake may be related to the wards chosen to be a part of the study. Some felt it was an extra burden on families. Staff felt they communicated very well with relatives. The timing in giving it out proved problematic: when was the right time? Decisions were made and it was usually too short to introduce the diary.
Multi-centred study- feedback from sites The barrier to the diary was the obtaining consent. Not all families wanted to use it. Not all staff saw the benefit. When the diaries were given out we had excellent engagement from the families that the diaries were given to. It gives us a unique feedback regarding symptom control, level of support from families’ perspective at end of life. It felt very positive, compassionate and respectful; to families to offer something at such difficult time
Multi-centred study- feedback from sites • Generally families were receptive to its use. Completed diaries worked really well when we did our ADA (After Death Analysis) which we do with all staff after every death. Diaries added depth to discussion. (positive) • The diary is well designed, clearly laid out and professionally produced. It is useful in the acute hospital setting. One feedback from a family was that they would like to use it weeks before death rather than in the last few days. We were surprised how difficult it was to recruit. • It was difficult to introduce. We have discovered that ward nurses have to be involved in its introduction. It is positive and negative. One problem has been the retrieving of the diary after it was used
Conclusion: What are the next stages? What families think is a 'Good Death‘ from the research: • To be informed about what is happening -how symptoms, particularly pain, will be managed. • To develop a good –trusting – relationship with the staff. • For staff to explain what happens when a patient is dying. • For staff to respond quickly and effectively to what the patient requires. • Treat the dying patient and family as if they were their own.
Staff need training and supervision Staff Voice (Survey) What are the challenges to introducing the Family’s Voice Diary and EOLC?
Staff Voice Feedback The implementation of the Family’s Voice and EoLC is highly dependent on creating a conducive safe environment where staff are confident in giving it out and explaining its purpose. We wanted to know what was their worse fear? What would prevent staff from engaging with the families of dying patients? What do you think they said?
Themes of worse fears • Being confronted by family who are angry and confrontational • Changing the focus of care to looking at a piece of paper • Not being able to answer questions • Families not accepting a loved one's death • I fear I will become upset
Being confronted by family who are angry and confrontational • Fear most when relatives aggressive/upset/ demanding/ threatening and unable to meet their demands / expectations which are often unrealistic / impossible to meet. Out of hours times are worst times. Female Surgery Nurse Band 5 • If family members are really upset from the loss of a loved one it is going to be challenging to approach them if they are still in denial or angry. Medical ward Nurse Band 5 • How to handle situations wherein families members who are emotionally distraught who lash out on staff members because of grief. Gastro Nurse Band 5 • My worse fear is the reaction from families during this emotional time. All I want to do is comfort families at their bereaved time. Respiratory ward nurse Band 2
Changing the focus of care to looking at a paper • Sometimes I feel that grieving relatives might see it is an exercise to tell staff "how we are doing" on the ward and not for theirs and the patients benefit. This is the only reason that I am sometimes apprehensive about introducing the diary. Surgical ward nurse Band 5 • Worse fear that relatives have enough to think about EAU ward sister • Fear that they find it inappropriate. Would like sessions on ways to introduce it and phrases its use. EAU Nurse Band 5 • Sometimes it is quite awkward, dying is a special moment for the patient and relatives probably one of the most intimate moments in life and as a nurse you could feel as an intruder. EAU Nurse Band 5 • Feel unsure interrupting a family to fill in the pack when they are spending time with their loved one on the pathway. I feel it is a confidence issue from my point of view. Female Surgical Nurse Band 5
Not being able to answer questions • Being unable to answer questions. Being confronted by family who may be angry or confrontational. Respiratory ward nurse • Dealing with the most common question of families. " How long it would be?" Respiratory ward nurse Band 5 • Unable to answer questions family ask. Come across as non supportive to family if I can't answer fluently. Ways to come across with empathy. Sometimes if the staff are nervous they can come across as harsh or non caring towards the family. Elderly care Nurse Band 5 • If they asked me questions that I didn't know I would like there to be more training so we can answer questions that could possibly come up. not fulfilling family expectation Elderly care Nurse Band 5
Clinical staff need for clinical supervision • There is a need to provide clinical supervision in clinical practice for frontline staff that focuses on these themes: • Worse fear- The anger and aggression may well be grief and one way to help is by being present and providing support but recognizing it as loss. Some times there is no answer and we have to be present to their pain. • This is a spiritual dimension of nursing care • The diary is a tool for staff development it sets out six clear goals of care and if achieved will define a ‘Good Death’’. • If unsure what to say go through the questions and ask if we are achieving them. Address the issues when they arise. • To questions you can not answer say ‘I don’t know but I will find out.’
Ambitions & One Chance to get it Right (2015) & (2014) The Ambitions for Palliative and EOLC (2015) emphasise the need involve families: • The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly by doctors and nurses. • Sensitive communication takes place between staff and the person who is dying and those important to them. • The dying person, and those identified as important to them, are involved in decisions about treatment and care. • The people important to the dying person are listened to and their needs are respected. • Care is tailored to the individual and delivered with compassion – with an individual care plan in place.
What does current Research suggest: The importance of communication and care in EoLC are reflected in recent research. For instance, Gott et al (2011) talked of the development of ‘shared understanding’ between professionals and families while Caswell et al (2015) encouraged family members to participate in ‘shared decision making’. Hanratty et al (2014) pointed out that if we use the skills of families and friends as advocates, it will give the patient ‘a voice at the end of life’.
Next Step: My Voice The next step is a research project that builds on the Family's Voice which uses expressive and creative writing techniques developed by Dr. Siobhan Campbell of The Open University. Mel McEvoy and Siobhan Campbell are devising workshops which will be for patients, families and health professionals in palliative care. We are using best practice as described in the all party Parliamentary Report, Creative Health: The Arts for Health and Well-being (2017). Workshops will provide opportunity for patients to find expression for the situation of their lives, but also in some cases to leave a legacy story. Families and health professionals, as two other groups involved and under some of the same pressures will have their voices heard through creative and expressive writing exercises adapted for the palliative environment. We hope that this project will amplify and consolidate the work done in The Family's Voice.
Contact details for further information Thank you for listening North Tees and Hartlepool NHS Foundation Trust mel.mcevoy@nth.nhs.uk 01642-624210
References • Department of Health (2008).End of Life Care Strategy: Promoting high quality care for all adults at the end of life. London: Department of Health. • Dying without Dignity (2015): Investigations by the Parliamentary and Health Service Ombudsman into complaints about end of life care. Parliamentary and Health Service Ombudsman. London, England. • Pollock K, Caswell G, Hardwood R, Porock D. (2014) Caring for frail or seriously ill older people dying on acute hospital wards. BMJ Support Palliative Care; 4: A20. • Pollock K (2015) Is home always the best and preferred place of death? British Medical Journal 351 (4855). • McNamara B, Rosenwax L (2010) Which carers of family members at the end of life need more support from health service and why? Social Science & Medicine 70: 1035-1041 • Peters L et al (2013). Emergency and palliative care nurses’ levels of anxiety about death and coping with death: a questionnaire survey. Australasian Emergency Nursing Journal 16: 152-159. • Snapshot review of complaints in end of life care key findings (2013). NHS Improving Quality. • Willard C, Lucker R. (2006) Challenges to end of life care in the acute hospital setting: Palliative Medicine;20:611-615. • McCourt R, Power J, Glackin M.(2013) General nurses’ experience of end of life care in the acute hospital setting: a literature review. International Journal of Palliative Care Nursing. 10 510-6.
References • Bloomer MJ., Endacott R., O’Connor M., Cross W. (2013)The ‘dis-ease’ of dying: Challenges in nursing care of the dying in the acute hospital setting. A qualitative observational study. Palliative Medicine 2013 27(8)757-764. • Weigel C, Parker G, Fanning L, Reyna L, Gasbarra DB. (2007) Apprehension among hospital nurses providing end of life care. Journal of Hospital and Palliative Nursing. 9; 86-91. • Mak YW, Chiang VC, Chui WT. (2013) Experiences and perceptions of nurses caring for dying patients and families in an acute medical admission setting. International Journal of Palliative Nursing 19;423-31 • De Aranjo MM , Da Silva MJ, Francisco MC. Nursing the dying: essential elements in the care of the terminally ill patients. International Nursing Review 2004 51 3; 149-158 • Deffner JM, Bell SK Nurse’ (2005) death anxiety, comfort level during communication with patients and families regarding death, and exposure to communication education: a qualitative study. Journal for Nurses in Staff Development. 21; 19-23 • Ambitions for palliative and end of life care (2015): A national framework for local action 2015-2020. The National Palliative end of life Partnership (2015). London, England. • Gott , M et al (2011) Transitions to palliative care in acute hospitals in England: qualitative study. British Medical Journal, 342: (1773).
References • Caswell G, Pollock K, Harwood R and Porock D (2015) Communication between family carers and health professionals about end of life care for older people in a cute hospital setting : a qualitative study. BMC Palliative Care. 14: (35). • Hanratty B et al (2014) Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study. Health Services and Delivery Research 2: (17).
