Note: This piece was written by Dermot’s family to develop their reflections and recommendations on the publication of the HSIB report, Variations in the delivery of palliative care services to adults, on 13 July 2023.
This is based on our learning from Dermot’s experience, and beyond the scope and findings of the HSIB report. It complements the report but the focus is on what services need to consider and maybe patients too, for potentially aggressive cancers.
To set the context please read the brief introduction linked here.
It has greatest focus on sarcoma care before palliation as the family believes this had a significant impact on the palliative care Dermot received and its chances of having a vitally needed positive impact.
It is about learning, reflecting, not blaming or criticising services in a challenging area at challenging times. The goal is to help others, stimulate discussion; feedback is welcomed (see Point 8 at end). Dermot had a particularly aggressive illness and traumatic experience, but we try to focus on positive learning. While the most difficult times for Dermot and his family were during the palliative period the roots for this were in the period well before, indeed the months after surgery.
These are challenges we believe services need to consider. This account is written from the patient and family perspective. However, we recognise it is based on our very specific experience, nevertheless reflecting many general issues
If the service had been able to deliver some or all of the care components specified below we believe Dermot’s suffering, isolation and confusion would have been less. This is the main reason for sharing this.
To summarise; we believe the following areas need attention:
- Diagnosis: Early diagnosis is crucial and its prognostic implications may change in some cases
- After initial treatment: It may be more than rehab and recovery if diagnosis and prognosis changes
- Self-care and monitoring after treatment: Understanding the risks of recurrence and what to look out for is essential
- The role of your GP and other health experts: An expert care and support network providing both medical expertise and a continuity of care is essential
- Palliative holistic care and support: It’s about timing and it is about general palliation, but some of it is about the specific sarcoma. It is all about the patient and what is happening to them as a person and their family
- The sarcoma challenge: Sarcoma is rare, often unpredictable and sometimes little is known, but expert knowledge can help navigate this challenge
- Conclusion: The Sarcoma Care Pathway: the 6 C’S of sarcoma care, formulated as a result of Dermot’s experience
- Other comments including Covid and opening of a discussion
1. Diagnosis: Early diagnosis is crucial and its prognostic implications may change in some cases
Dermot had to fight hard to get a diagnosis. A growing painful lump needed a diagnosis as quickly as possible. The fight was stressful but worthwhile.
What we learnt: One has to chase up, the earlier the better. Avoiding doing this can mean loss of valuable weeks and months of medical support and treatment. These themes echo throughout
Question to consider: Something all patients need to consider is how much information they want to know. Dermot wanted to know and fully understand what he was facing.
2. After initial treatment: It may be more than rehab and recovery if diagnosis and prognosis changes
After the surgery the sarcoma’s stage and grade was reassessed. This came with recommendations from sarcoma experts at the treating hospital. New scans were needed and a revision of the risk of spread. Dermot was not informed of all of this including its significance and monitoring implications. This was only discovered after his death by reading the medical notes.
Unfortunately scans were not done and the significance of this regrading was not passed on to Dermot with any clarity. The hospital had advised in paperwork he signed before surgery that there was 10% chance of recurrence but we have since been advised the chance was nearer 50%. The reasons for this have not been investigated or even acknowledged and this is something services need to consider.
Furthermore, the discharge from hospital was falsely reassuring for Dermot with follow up radiotherapy described as ‘a belt and braces approach’ after successful surgery.
What we learnt: A clear and realistic explanation was needed of the more serious nature of his sarcoma consistent with that shared with his local hospital in his medical notes. Sarcomas may sometimes only reveal their true nature later. In addition to a ‘belt and braces’ treatment a belt and braces review of the impact of treatment was also needed and might have helped Dermot understand what could happen after surgery.
Questions to consider: If patients would like to know they should be told what surgery has revealed in a clear and factual manner. What scans and x-rays have been recommended by the hospital? Patient should not have to chase up if they do not get the kind of follow up from pre surgery scans that they have been led to expect; some conditions require 3 monthly follow up scans. Diagnosis improves in accuracy over time. Things can change. Dermot would have wanted to keep ahead of the illness as much as possible if he had been properly informed.
3. Self-care and monitoring after treatment: Understanding the risks of recurrence and what to look out for is essential
Dermot suffered chronic symptoms after his surgery, some starting during his radiotherapy (in his case nausea) and some other symptoms were noted retrospectively (fatigue and weight loss). The nausea was reported by him numerous times to oncology nurses who said this was not a typical side effect of radiotherapy he was receiving. This should have been a red flag for services and for Dermot. In his case it was more significant as he was not likely to over report.
What we learnt: This is a complex medical area; it requires expert oversight as there are complex questions to answer. How much are symptoms typical of someone his age? Or a side effect of treatment? Or indicative of recurrence or spread?
Questions to consider: What symptoms should be looked out for? What are ‘red flag ‘symptoms? Patients need advice in advance and then ongoing. Expert support is vital. What self-monitoring is advised? How do we optimize continuity of care?
4. The role of your GP and other health experts An expert care and support network providing both medical expertise and a continuity of care is essential
The HSIB report does discuss and attempt to address the confusion about medical responsibility of different services when Palliative services are involved. The family believes this had just as great significance for Dermot in the post-surgical management of his sarcoma which cannot be ignored
Medical services availability will vary from area to area. Something very specific to Dermot was that he lived in a rural community, with only one local GP practice, many hours drive from the hospital that did the surgery, and nearly an hour’s drive from the regional hospital where he got the radiotherapy and the oncology follow up services.
People need a local or at least easily accessible person they can make contact with. Dermot and his wife never had that person or it wasn’t made clear who the person was. This person and service could play a major role in providing:
- Specialist oncology support, to monitor the significance of any concerning or persistent symptoms which could be related to his sarcoma.
- Regular medical support for new, related and unrelated symptoms. For example when Dermot was finally admitted to a hospice funded bed in a community hospital for short term symptom management many previously missed physical symptoms were discovered including low blood pressure, low haemoglobin and oral thrush. The vital role of the GP is discussed below.
- Personal support, crucially someone who knew Dermot as a person over a period of time, someone who he could talk to about these difficult things and who may have picked up the significant changes earlier. This person could also have played a vital role at key moments in his sarcoma journey offering person centered individualized support to meet any emotional needs. For Dermot this would have been around the time his prognosis radically changed.
The potential role of the GP, the only truly local medically responsible health professional in Dermot’s case, is one of the family’s big concerns. In ‘the old days’ with less stretched GP services and less frail people on their books, GPs could get to really know and even visit their very ill patients regularly. Not nowadays it appears and for very understandable reasons due to resources and caseloads. An eminent expert told us that given Dermot’s geographic location the GP should have been his key point of contact. Sadly, even when Dermot’s postoperative symptoms got worse, and he felt acute pain, it was next to impossible for him to get a GP appointment.
But another eminent expert put it all another way:
‘We need some sarcoma teams to do better to identify which member of their service will retain contact with a patient (surgeon/oncologist/specialist nurse/physio/pall care team member) on behalf of the whole service so that
- patients and families know who is their first point of contact
- service retains a regular overview of progress through staging investigations, surgery, post-op recovery & rehab, oncological treatments, symptom management, retaining/rehabbing mobility/activities of daily living
- new or changing symptoms are flagged and responded to quickly
- all sarcoma service team members should have the competence to review patients and bring new problems (or unresolved old problems) back to Multidisciplinary Team for review’
Lessons learned: Right from surgery onwards there needs to be someone, ideally in oncology services, who can consistently offer continuity of care. Someone who knows the patient, who they can reliably call for advice and support and who will note significant changes.
Questions to consider: Patients need clear written advice about who their medical care key point of contact is, whether the oncology team or the GP practice and could also benefit from the added support of a worker in a local or national cancer charity. It will vary a lot. The Sarcoma UK Support Line may have tips for individual situations
5. Palliative holistic care and support: It’s about timing and it is about general palliation, but some of it is about the specific sarcoma. It is all about the patient and what is happening to them as a person and their family
The earlier palliative care services are involved the better as the goal of palliative services is always to get ahead of symptoms so that interventions can work quickly. A very late referral makes everyone’s job harder. It’s about relationships, knowing the patient as an individual and their condition and symptoms before it advances too far. Getting ahead of the illness, once again.
While the referral to palliative services was late, the family recognises that they made swift contact and had numerous exchanges via telephone and in person. But the issues regarding palliative services were that they did not appear to appreciate the nature of Dermot’s condition or really understand it and its history. Palliative services will also meet patients on different types of trajectories and at different stages. We wonder what adjustments could have been made for someone like Dermot. We spell out some of the shortcomings below which do connect with previous issues raised above around continuity of care.
While Dermot was assessed very quickly at home by the palliative team, Dermot and his wife did not feel it was a holistic assessment based on his illness, his illness history, or his individual approach to what was happening to him. It was more like identifying a few things to work on and then going away. The HSIB report findings concluded ‘Holistic assessments for Palliative End of Life Care Services may focus on physical care needs with more limited attention to identifying, understanding and addressing other care needs, particularly psychological needs’. Indeed, there appeared no recognition that Dermot was at a point of crisis and needed to consider many things:
- That his condition had returned with a vengeance despite being told it was all treated. He was at a point of mental and physical anguish
- The possibility of trying palliative treatment of his sarcoma, which would merely delay its progress and which would in his case make him feel more ill and likely not work
- How to get effective help with symptoms he had had for many weeks
- Also consider many other things like financial allowances, where he may want to die.
All vitally important issues but so hard to consider as part of a one-off visit when you are felling very unwell and dealing with a devastating prognosis
Discussions were carried out in various phone calls and a couple of home visits by different people. Recently I met a person who used to work in palliative care as a manager of complementary care provision. She said what was needed, that was something far beyond medical and technical help, was someone who had time to know what Dermot wanted, how it fitted in with his previous life. This would have been a challenge given how ill he was and how late in the process. But on the other hand, Dermot’s service appeared to lack any framework like that. It was very much piecemeal, medically focused, not holistic, whole person and whole family timely assessment or support. We write this despite the service saying they carried out a holistic assessment.
Further, there seemed no awareness of the nature of his sarcoma spread and how that could explain some of existence and interaction of physical and psychological symptoms. Once again continuity of care was lacking when it was most needed, despite evidence from scans which Dermot had to push to get.
Sadly, even the discussion of Dermot’s prognosis and imminent death was not handled as well as it could; no one person was involved. There was confusion about what was really happening to him, and difficult conversations were not handled appropriately. The fragmented nature of the palliative provision in the community and in the local hospital we believe contributed to this and came on top of the lack of continuity of support post-surgery.
The attempt to support him at home turned quickly into a crisis admission to the only local facility that offered palliative support. The family feared an acute hospital admission via Accident and Emergency. This would have been the worst outcome, but it was quite a struggle to get the right expert palliative setting, as the HSIB report analyses, and stressful for Dermot and for the family.
Hospice care increasingly focuses on support at home, but it can offer urgent specialist care to help get ahead of symptoms before discharging people home. Dermot sadly continued deteriorating in the palliative bed in the local hospital. Everything was occurring too late, there was still no one who knew or understood what was really happening to Dermot in what were his last 2 weeks of life. Nothing may have delayed his death but more knowledge and wisdom from services would have helped them in meeting his vital human needs as his life came to an end.
Support of spouses and key family members is also vital. They may also have valuable information to impart. Surprising given there has been recognition for years of this need for services to focus on this group of people too. Maybe because Dermot’s deterioration was so very fast his wife was not even properly and individually consulted as to what had been happening to Dermot the previous few weeks. This would have helped services to get a fuller more accurate story and understanding what Dermot and his wife faced.
Lessons learnt: Continuity of care is so important and looking at the whole personal, psychological, medical and the specific, individual sarcoma experience. Services need to be designed with this in mind and thought given to how they integrate with services that have worked with patients before palliation is recognised as the main stage of care.
Question of services: Whose job is it to provide this type of care and support? Is it available? If not what advice is given to patients and families?
6. The sarcoma challenge: Sarcoma is rare, often unpredictable, and sometimes little is known, but expert knowledge can help navigate this challenge
While rare and unpredictable conditions may be more difficult to support it still doesn’t mean nothing can be done. There are experts used to dealing with these kinds of unknowns, for example in some oncology teams and specifically in Sarcoma UK where specialist nurses offer a helpline. Rare unpredictable illnesses require extra vigilance and monitoring. They do need the belt and braces care. This would be accompanied by communication between experts and non–specialist services. Even the in-patient palliative services did not seem to grasp the nature of Dermot’s illness. They seemed to only know how to meet his needs when he was unconscious and in the last few hours of his life.
Lessons learnt: Early specialist involvement would have meant someone knowing Dermot and his condition, able to inform and educate the involved services as required.
7. The Sarcoma Care Pathway : the 6 C’S of sarcoma care, suggested because of Dermot’s experience
As a conceptual summary we highlight what we call the 6 C’s of a Sarcoma Care Pathway for a challenging, unpredictable condition which may be needed to facilitate optimal timely palliative care.
- Comprehensive assessment: assessing where the patient is on their care and palliative pathway, taking account of the illness history and both psychological challenges and physical symptoms they have faced and will need to face
- Compassion: People skilled in holistic supportive understanding and expertise in how to address any psychological trauma and challenges patients may face on their journey
- Connection: developing a relationship with a sarcoma expert who joins the patient on their life care pathway
- Clarity of communication: Vital given the nature of the diagnosis and prognosis as it emerges and changes, for example, signs of possible progression, recurrence or metastases and how that impacts the patient.
- Change-monitoring: An expert who knows the patient and could pick up any kind of decline despite what may be initial ‘successful treatment’, and could help identify red flag symptoms requiring more assessment, also ensure necessary scans occur in a timely fashion and finally provide safety netting systems.
- Continuity of care: There needs to be continuity in the support received, the information shared and most importantly in consistent relationships with trusted people.
All can be seen as elements of communication which is clear, timely, efficient, specialist with the patient and family and between services
Challenges for the health care system
Post-surgical oncology services have a vital role and good palliation needs this foundation. The transition is a key point, and one must try and avoid the loss of a vital relationship and knowledge base. Each locality will have its own service system challenges which need addressing for all patients in their catchment area. For Dermot it was a relatively isolated rural setting. As the HSIB report says, services should clearly specify what patients and families need and expect and then provide information. Further, as one eminent palliative expert advised us, oncology services, as they develop and evolve, need to plan for associated palliative services.
8. Other comments
The role of Covid and resource pressures
The HSIB report comments on how Covid affected the provision of services. However, we believe Covid, overall, merely emphasised existing system weaknesses. For example, Covid may not have prevented regular phone contact, which would have allowed relationship building, change monitoring and enabled more timely urgent physical review if needed. For us, the question remains – would the same thing happen to Dermot now, in a so-called post Covid world?
Likewise, lack of staff is a crucial issue for the NHS, but we believe that to provide good care for illnesses like Dermot’s will present other challenges. We have tried to spell out the nature of the challenges and how to meet them and the special care needed in cases like Dermot’s.
We would like our family insights to be seen as the start of a discussion
We hope this contributes to discussions about the development and evolution of palliative services but also for sarcoma services in general and it may be also of relevance for those with other rare and potentially aggressive terminal conditions. We do regret that to date no medical experts have fully assessed Dermot’s experience with the scope we have identified and examined the conclusions we have come to. We are fortunate to have had some private exchanges with some key experts who have contributed to our thoughts. We have tried to say important things which have not been written about, in our opinion, in materials promoting palliative care services and sarcoma services, and in the HSIB report.
We mention issues that bear on challenging cases like Dermot. We acknowledge the challenges to services which we know are under other pressures currently. In a genuine spirit of openness and wish to discuss this we do invite further contributions and comments from system experts and other patients and their advocates as we believe this is primarily about system learning. It’s about cross specialty and cross-service learning, where the insights of patients and families can form not only a starting point but an opportunity for dialogue.