Jewish Care was praised by the judges for its dedication to ongoing training opportunities across the organisation. Jewish Care’s particular emphasis on reflection post death and focus on what can be learned from each bereavement to improve outcomes for future residents and families struck a chord with the judges. Excellent advanced care planning was also commended.
Shifting the focus
In a crisis situation, health care focus is generally asking about emergency treatments (such as DNAR/CPR – Do Not Attempt Cardiopulmonary Resuscitation or Cardiopulmonary Resuscitation), making conversations stilted, as it focuses on treatments to be avoided rather than concentrating on quality of life remaining.
During 2020, COVID-19 spotlighted the topic of death, forcing individuals and families to talk about dying and decision-making; something people rarely consider. Advance Care Planning (ACP) enables people to make decisions about their choices and preferences whilst they have mental capacity and record it in various non-legal ways. Because most of us do not volunteer these conversations while we are well, they often take place hurriedly when it may be too late.
Beginning with what matters most to people can help compassionate conversations flow and normalise the importance of regular advance planning as a matter of routine.
Respecting people, culture and tradition
We encourage individuals we support, both in the community and in our care homes, to have meaningful conversations about end of life with important people in their lives. Jewish Care designed a culturally specific Advance Care Plan, which takes into account Jewish traditions and cultural practices to enable people’s choices and preferences to be documented.
Additionally, should people lose mental capacity at any age, temporarily or in the long term, they gain peace of mind knowing that what is important to them will be considered by giving Health and Welfare Lasting Power of Attorney to people they trust. These people can then advocate with medical and health care practitioners who may need to make decisions about their care and treatment.
Quality of life is not just medical – there’s a whole person to consider. For example, is the person being supported the type of person who wants to know every aspect about their illness and, if not, who would they want to assist them and share the information? Understanding what matters most to someone today, tomorrow and for the future, is about having regular meaningful conversations with important people who need to know, about living life, as well as talking about the end of life.
Promoting meaningful conversations
During COVID-19, staff at our care homes were supported to have discussions with residents and their families about DNAR/CPR, be admitted to hospital and about whether to be admitted, or remain in our care home. People and families in our care homes and the community found themselves unexpectedly taking difficult end of life decisions, co-ordinating burial arrangements and trying to make sense of powerful and overwhelming emotions. Staff can also achieve a greater sense of purpose and fulfilment, knowing they did the best they could to honour and respect a resident’s choices and preferences where possible.
It’s about having regular meaningful conversations about smaller things in life. Listening with compassion, looking for ways to engage with the person and focusing on the things that matter most to them gives them the dignity, respect and a sense of control. Advance Care Planning means you can discuss and plan your future care and treatment. You can also keep a formal record of your wishes. Advance Care Planning is voluntary, and you can change your wishes at any time. If you become unwell and cannot speak for yourself, an Advance Care Plan will help health and care professionals, and those close to you, to understand your choices and preferences when making decisions about your care.
If the Advance Care Plan cannot be completed by the person due to lack of mental capacity, it can be filled in by someone legally appointed to have Lasting Power of Attorney for their health and welfare. In this situation, the appointed individual must consider what care would have been wanted and what is in the best interests of the person. Discussions with family, carers and others who are close are extremely important and can help.
People are living longer with increasing dementia diagnoses, multiple health conditions and acute frailty. Discussing plans in advance helps people to think about their attitudes to quality of life versus quantity
Helping families to plan for end of life
Too often, families are left with lasting unease, guilt and remorse as the result of unresolved questions and answers. Evidence suggests there is still not sufficient relevance placed on the importance of having early conversations and recording about Advance Care Plan discussions. So, unfortunately, when a crisis or death occurs, family and friends too often do not know what the person wanted.
When choices and preferences are discussed ahead of time, it can prevent people receiving treatment they may not have wanted had their options and views been better understood. We also inform people of available palliative services and how to manage an end of life situation at home, which can often be helpful in preventing an emergency admission. Jewish Care also works with health and social care teams to be part of a multi-disciplinary conversation, supporting communication and understanding of cultural issues around Jewish burial and mourning traditions.
Emphasising compassion and dignity
We’ve seen that having regular reviews is paramount as a person’s choices and preferences about care may change over time. These regular conversations enable our staff to put in place an Advance Care Plan that emphasises compassion and dignity. It is important for us to capture a person’s choices and preferences alongside their cultural values, helping them to feel heard and respected, providing comfort to family and friends who can help their bereavement journey.
We hope to reduce the number of people experiencing disturbing memories of events leading up to a death and enhance the bereavement journey, helping people to achieve an ending that is dignified and respectful, bringing with it a sense of comfort, satisfaction and peace.
We would like it to become standard practice for staff to look and listen for ways to engage; talk about smaller things and focus on things that matter most to a person. Staff should have regular access to training on Advance Care Planning, End of Life Care, and Palliative Care guidance. This, along with greater public awareness of the importance of encouraging compassionate Advance Care Plan conversations and education with regular reviews, would help to give more positive experiences at end of life.
The Markel 3rd Sector Care Awards is run specifically for the voluntary care and support sector. Visit www.3rdsectorcareawards.co.uk to view the 2022 event winners and find out more about next year’s event. Sponsorship opportunities are available.
With thanks to our supporting organisations: National Care Forum, Learning Disability England, The Care Provider Alliance, Association of Mental Health Providers and VODG.
The End of Life Care Award was kindly sponsored by Towergate Insurance.