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Recommendations Out-of-hours palliative and end of life care is currently inadequate and fragmented, and must be better valued, prioritised and strengthened. Services must be developed and provided equitably, irrespective of diagnosis, socio -demographic characteristics (e.g. age, ethnicity) and geographical area. Service development and planning must be actively informed by the voices of patients and informal carers; collaboration with patients and informal carers should be used to drive improvements in out-of-hours care, shape service development and help identify potential solutions for gaps in care. Integrated Care Systems, Health Boards and NHS Trusts, Integration Joint Boards and NHS Health Boards, and Health and Social Care (HSC) Trusts across the UK need to strategically develop, enable and support greater integration and coordination of out-of-hours services. District nurses and community nursing teams play an extensive role in providing hands-on out-of-hours care, but huge pressures on this workforce limit the care they can provide; improved workforce planning, provision, and support for community providers of out-of-hours palliative and end of life care is essential. A designated telephone line for people with palliative and end of life care needs and their informal carers should be available 24/7, in every part of the UK. Availability and use of shared care records should be audited regularly to overcome the challenges identified in using, sharing and implementing these records across the UK. Such records should be based on timely conversations about needs, wishes and preferences for care at the end of life, and include the availability of anticipatory medicines (if appropriate). The questionnaire provided in this report can be used by those with commissioning responsibilities to understand and address gaps in out-of-hours service provision and identify priorities for improvement. Research into out-of-hours care is essential for future service development and needs continued funding.

This research from Benjamin Kah Wai Chang and Pia Matthews was conducted between May and August 2021, during which COVID-19 hospital cases were relatively low and pressures on NHS resources were near normal levels. Data were collected via online survey sent to doctors of all levels and specialties, who have worked in the NHS during the pandemic. In total, 231 participants completed the survey. The research found that over half of participants reported making more patients DNACPR than prepandemic, and this was due, at least in part, to an increased focus on factors including patient age, Clinical Frailty Scores and resource limitations. In addition, a sizeable minority of participants reported that they now had a higher threshold for escalating patients to ITU and a lower threshold for palliating patients, with many attributing these changes to formative experiences gained during the pandemic. The study found that there has not been a statistically significant change in the views of clinicians on the legalisation of euthanasia or physician-assisted suicide since the start of the pandemic. The authors concluded that the COVID-19 pandemic appears to have altered several aspects of end-of-life decision making, and many of these changes have remained even as COVID-19 hospital cases have declined.

Key findings Many more people died in 2020 than usual, with many experiencing tremendous hardships at the end of life. The place where people died changed, with many more dying at home. Palliative and end of life care services have been a vital part of the pandemic emergency response, switching their services into delivery in community settings. Care was compromised by shortages of essential PPE, medicines and staff – these were made worse by hospices not being seen as 'frontline NHS'.

Key recommendations Ask the patient if they would like to have the conversation and how much information they would want. All healthcare professionals reviewing patients with chronic conditions, patients with more than one serious medical problem or terminal illness, should initiate shared decision making including advance care planning in line with patient preferences. Conversations about the future can and should be initiated at any point. The conversation is a process not a tick-box, and does not have to reach a conclusion at one sitting. Be aware of the language you use with patients and those they have identified as being important to them, and try to involve all the relevant people in agreement with the patient.

Imagine... You are 80 years old. You live independently and have a full social life with friends of similar ages. You have no close family; your friends are your family. You are very much part of the community and enjoy life. Every winter you get a ‘bad chest’. You visit the GP when this happens and get antibiotics. This is your only health issue. Being locked down hasn’t been an issue for you. Life is different, but the village you live in has a great support network, you can get shopping delivered, you are connected via the internet to your activity groups – even tai chi on zoom! You receive a phone call from your GP. They state "...with your chest, it's unlikely that you will survive this virus. So, I need to ask you... do you want to be placed on a ventilator and do you want to be resuscitated?" They expect an answer while they are on the phone to you. You have less than 5 minutes to respond. "Errrrrr, yes… I have lots to live for, please do everything you can" is your reply. You put the phone down and cry. You are scared. What now? This is a real case that was told to me this morning. ‘Difficult conversations’ are needed. They have always been needed. Whether that be in primary care or secondary care, these conversations are important. It is important to find out what patients and families wishes are, important to offer informed choice of what treatments will be of benefit and important to manage expectations from both, patient, families and clinicians. Much has been written on how to have these conversations, when to have these conversations and by whom – this advice has been written in a non-pandemic time where people have the time, have up to date, clear information that patients and families can discuss the issues. Some GPs are using the RESPeCT document, its been slow to adopt and spread, but if completed makes the world of difference. Having an open conversation about dying may feel taboo, but you only get to die once (usually)… you may as well do it well. Where I work clinically, all patients who are suspected COVID-19, have a treatment escalation form completed as they are admitted. This informs other clinicians what treatment that patient can receive during their admission. If a patient doesn’t have a treatment escalation discussion, patients may experience unnecessary pain, suffering or futile treatment that they didn’t want, but were unable to say. The treatment escalation form and process we are using has transformed and streamlined our care. We are now able to give the right care to the right patient at the right time. Patients and families are fully informed and are grateful for having the conversation. But what happens during the pandemic in primary care? GPs are unable to wait for their patients to turn up to the surgery to have these conversations. Many of their patients are the most vulnerable, in care homes, the homeless and often difficult to reach. Is a telephone call, out of the blue the best way of having this conversation? GPs have hundred, if not thousands of patients on their case load, how are they to have meaningful conversations during this pandemic with the most vulnerable? This blog is not to highlight the bad practice. It is not a time for naming and shaming. We are learning together. Are you doing things differently? Do you have a solution? Are you a patient and have an idea on how we can do this better?

Over the last 2 years we have been changing some of our conversations within Marie Curie Hospice, Hampstead, with a view to promoting this patient-centered approach. We developed a new suite of questions, including: “What matters to you?” “What’s important to you today?” “What is worrying or annoying you?” “How can we best support you?” The outcome of these discussions is fed into the weekly MDT meeting and reviewed by all those involved in the patients’ care and then action points are agreed upon in response. Ask, Listen and Act. This suite of questions has helped us listen to and action what matters to patients. These conversations have significantly changed the focus of the MDT, ensuring that discussions are centered on areas of greatest concern and importance to our patients. So, has it made a difference? Practice has changed and the suite of questions have become embedded in practice. 100% of patients, every week, are offered a "what matters to you?" conversation; patients are now presented in the MDT by stating their name, age and then what matters to them, before even their diagnosis or symptoms are discussed. Each week the team learns vital pieces of information that we would not have known, had we not asked these important questions. It has also helped professionals connect on a more personal level with patients and anecdotal evidence has shown an increase in job satisfaction. Key learning points You can’t guess what matters to patients. Some people find it uncomfortable talking about what matters to them. What matters to patients can change, so it's important to not only ask once. Asking what matters helps us to see patients more as people and connect with them on a different level. Three elements make what matter to you successful – Ask, Listen and Act. Discussion Asking patients "What matters to you?" is a powerful, simple question that can positively influence care, practice and job satisfaction. It costs no additional money. Research is now needed to investigate the financial implication of not asking "What matters to you?" and perhaps the emotional implication to our patients if we omit the question... Take a few minutes to think how you would answer: What matters to you today?

From 2005 to 2009, between 400 and 600 more patients died at the Mid Staffs Foundation Trust than would have been expected. The high mortality data being a red flag to go and check. To actually open a door, enter a ward and see and hear the patients and their family’s experiences. Cost cutting and prioritising of targets and obtaining foundation trust status sadly resulted in the patients and families becoming lost and not always a priority in a care system that had, in parts, become immune to the sound of pain. The Public Inquiry heard from 250 witnesses and over a million pages of documentary material. A 'story' of the appalling unnecessary suffering of hundreds of people. A lack of care, compassion, humanity and leadership. The most basic standards of care were not observed. I was one of those 250 witnesses that gave evidence on oath. Trying to give my mum a voice. The voice she no longer had. A report to the majority, something that happened to other people. One of those other people was my mum, Ellen Linstead. Fast forward to August 2019. A family anxiously enter a hospital setting, worried, a little scared as memories come flooding back. A conversation in a small room, information given, scans, test results, questions answered, time given freely, wonderful communication. A consultant and clinical staff working together to ensure everything is relayed precisely and extremely clearly. Reassuring for this family. An elderly gent is in a hospital setting, in a side room, in a hospital bed. Outside of the door, life is busy carrying on in this hospital ward. The sounds of that ward intermittently seep into the side room of this patient, bringing back stark memories that this family have for many years, and will always struggle to live with. This elderly gent is Tom Linstead. An 83-year-old who has spent the last 13 years of his life desperately missing his wife Ellen. A father, brother, grandfather, uncle, husband, now widow. A life spent well, full of love and kindness. As a man there was no better. One of his family members sitting beside him is his daughter. This is her experience. As I look down my hand seems small holding gently the larger hand it has held for many decades. A lifetime of memories are captured in that moment of hand holding. A daughter is sitting close to her elderly father and she is cradling his hand in hers. A tear falls from the father's eyes as his breathing becoming more laboured with each breath. The father opens one eye and looks at his daughter, their gaze held for a few moments, much is said in that last look between a father and his daughter, it is to be the last time they communicate. A precious moment that they both know will need to last for eternity. The elder gent is in a Staffordshire hospital setting, a hospital bed, at end of life. The daughter says very gently to her dad, mum's waiting, you can go to her now. Hug her from me, tell her I miss her, I love you and will carry you both in my heart for always. Then the breathing is no more, the room is still apart from the daughter who holds her fathers hand tightly now. Thirteen years of tears and emotion overspill into the room. This father and daughter have survived every day of the last 13 years by taking some days one hour at a time and loving each other with all their heart and soul. Thirteen years previously the same family had sat with a deceased lady who had died in heart-breaking circumstances, suffering unnecessarily before dying. These memories have walked shoulder to shoulder with this father and daughter, never leaving them. Inner peace lost, lives changed for always. Hopes and dreams for the future crushed. This wonderful lady died tragically at Mid Staffs in 2006. After his wife’s death this gent surrounded himself with his family, becoming the centre of their world, but never really being able to truly live after losing his wife and soul mate in such a distressing way. Visitors pass by his room door, busy staff supporting patients. Catering staff are once again doing their rounds offering food and fluids to anyone who would like them. The atmosphere is calm and friendly and incredibly professional. There are no shouts for help unanswered, no buzzers ringing out for lengthy periods. The daughter cannot help but contemplate how different that last decade and beyond of her life would have been if her mum had been on this ward, in this room all of those years ago, and things may have been so different. These thoughts bring tears to the daughter’s eyes. The nursing staff are professional, incredibly supportive and kind. They smile knowingly at the family as they pass to and from their loved ones side room. The consultant has entered the room several times over several days and asked if Tom and his family need any further support, do they have any questions, do they need absolutely anything? He advises he is on the ward and if they need anything please do not hesitate to approach him. If he is not on the ward he is always contactable, and they should not hesitate to do so. This kindness gives the family so much comfort, the reassurance that their dad matters, and so do they. It is difficult to really put into words, but so important that they are put into words and shared. Final memories are so very important, they remain with family members for all time. End of life final experiences for patients and their families are just that, final, not able to be repeated. Its why in my humble opinion they are so important to be supportive, peaceful memories for all. Healthcare assistants, nursing staff and catering staff enter the room at various times, very quietly, they support the patient and his immediate loved ones sitting around his bed. Personal care is attended to, pain relief, full explanations of what is and will happen is given, so very reassuring for the emotional worried faces siting around the bed. Everyone is supported. The ward is clean, the side room spotlessly clean, comfy chairs are available around the bed, family are told they are able to stay, come and go as they wish, there are no visiting time restrictions. This is a setting in which a patient can spend their final days, hours , with dignity and respect. Tom is in The Royal Stoke University Hospital of North Midlands Trust, which also now runs Stafford Hospital, now known as County Hospital. He has a Purple bow at the end of his bed and on the front of the door to his side room. The Purple bow scheme identifies patients coming to the end of their lives. The bow is a visible sign for all that this patient and family need ongoing support at a very emotional time. It quietly and respectfully signals to everyone that they need to be mindful and respectfully ensures everyone is aware and understanding around the patient and their loved ones whilst they are nearby. A small pack is also given to the family with vital information enclosed, letting families know what extra support is available. The very visible signage can also be used in a ward setting. Tom had a purple bow follow him to a side room after being on a ward for a short period. It was somehow extremely comforting to the family that it followed him. Food and drinks are continually offered to the immediate family, they are made to feel that they are also being cared for, looked after to enable them to continually be with their loved one. An empathetic smile from passing staff, a nod from others, ongoing acknowledgement that the family are not alone. It again brings the daughter to tears, this is how it should be for everyone. The daughter is me, Deb Hazeldine. Thirteen years ago, without even knowing I became a patient safety campaigner after losing my mum in the Mid Staffs disaster. I have given my mum a voice over many years, and now I will try and give my dad a voice also. Thank you to all of the staff at the University Hospitals of North Midlands NHS Trust (UHNM) for their wonderful support. The end of life, palliative care team, ward 102 and SAU. Your professionalism, your kindness will never be forgotten. My dad received exemplary end of life care. Your staff also cared for me and my family. For me this meant so much because to this day I struggle to be in any clinical setting. Thank you to the hospital chaplains, you gave so much comfort at a time when it was most needed. Death comes to everyone; however, it’s how you die and the memories you leave with your loved ones. Thank you for ensuring my dad’s final days were peaceful and dignified. I cannot say how much this means, to be able to retain peace during and after my dad’s death. Thank you. Both of my parents died in clinical settings in Staffordshire, over a decade apart. Memories of one haunt me to this day, another gives me peace. So very many people have, and continue to, work incredibly hard to ensure lessons have been learned from Mid Staffs. Thank you to each and every person that is ensuring myself and my family continue to have ongoing hope for the future. Having lived through the troubled times at Mid Staffs, I have to date never entered a clinical setting that was anything like that time. Patient safety is an ongoing journey and change can often feel frustratingly slow; however, I feel it is disingenuous to state absolutely nothing has changed since the Francis report, because in Staffordshire it has. How terribly disheartening for all dedicated staff to not know how much this hard work is appreciated. As I have stated many times, the NHS’s best asset are its dedicated staff. From myself, my Dad and my family, thank you. It does not go unrecognised and will never be forgotten. Within the Francis reports, enclosed in the pages are learning for all staff, and also so very importantly precious loved ones and their final weeks, months, days. To know that these reports have been acted on, taken to heart by Staffordshire healthcare settings is a fitting tribute to all who died too soon.

This document from the Faculty of Intensive Care Medicine (full and abridged versions) plus the accompanying lay summary provides recommendations for effective decision-making and resources for clinical teams and the general public. It hopes to encourage open, clear, honest discussions with patients and families enabling improved advance care. Such arrangements will enhance care planning and empower patients, carers and clinical teams to better engage in shared decision-making processes that respect both the philosophical and physiological aspects of individuals’ lives.