We want to use case studies to illustrate the good experiences and the challenges that people face when using community-based specialist palliative care services so that we can learn from their experiences.
Rebecca’s mother was diagnosed with pulmonary hypertension and subsequently began using the community palliative care service. She passed away in April 2021 and the family kindly agreed to share a summary of the care and support received so that we can learn from the experience. We thank Rebecca for sharing her story.
The family found the staff of the specialist palliative care service to be friendly and helpful and their helpline to be invaluable, particularly over the weekend. They provided carers who were supportive and respectful, helping the family immensely. The equipment that was ordered arrived promptly and they also found the occupational health and complimentary services to be very good.
The family did encounter some issues with the overall process though.
Rebecca’s mother had decided she wished to die at home and was informed by the specialist palliative care nurse and the care planning (My Care My Way) nurse that they would arrange for her required medication to be prescribed. Following a call from the specialist palliative care service team, Rebecca travelled to her mothers’ nominated chemist to collect the prescription but one item was out of stock. Rebecca worked out that this was the pain medication that was needed immediately and then had to contact the palliative care service and various chemists to get the missing item. This involved travelling some way and leaving her mother alone at home. Also, when her mother reached the end of her life, there was another item missing that Rebecca was not aware of, as she did not know what was on the prescription.
Rebecca’s mother took a turn for the worst at 6pm, which due to service opening times, proved incredibly problematic. The local GP service informed the family it was too late for them to do anything and the 111 service said it was too early for an out of hours GP, so the family had to call an ambulance. When the ambulance arrived the crew asked for the District Nurses folder, which the family didn’t have, nor were they aware they should have had one. This was required as the ambulance crew needed a medication chart to administer the drugs. The crew did not have the ability to access the folder online (as they lacked S1 access) and it was too late for them to call the GP or specialist palliative care service (as they don’t visit out of hours). Instead they called for an advanced paramedic to attend so the drugs could be administered in the absence of the medication chart. This took a number of hours and was in addition to the missing item of medication, which now could not be prescribed by the GP either. This whole experience was very distressing for both the family and Rebecca’s mother.
Next, the District Nurses and other health professionals working with the family, arranged to meet at Rebecca’s mothers’ property to review her case but no one informed the family this would happen. It meant people arrived and the family did not expect them and didn’t know why they were there. One member of staff made a call on his loudspeaker and then had a conversation with the other clinician, suggesting Rebecca’s mother was rallying a bit but was basically at the end of life and did not have long left. This conversation took place in front of Rebecca and her mother, although fortunately her mother did not hear it. If she had it would have been an awful situation as she was understandably very anxious about what was happening.
Rebecca would like her family’s experience to inform improvements to the way in which palliative care is delivered so that other patients and their families receive better outcomes and the best care possible.
James looked after his mother as her sole carer during her terminal illness between 2015 to 2021. Their full moving story, in his own words, is available here and we are grateful that he has allowed us to share a summary of the care and support (both good and bad) that was provided to his mother and to himself, so that we can learn from this experience.
James’ mum, Joan, was originally diagnosed in November 2015 with terminal lung cancer. She was informed that there was no effective treatment available and that she had six to twelve months to live. She in fact lived for five and a half years with her son’s support and care and her spirit keeping her going.
In March 2021 Joan was discharged from the hospital oncology team into the care of the community for palliative care. There were delays and mistakes in getting a full and appropriate care package in place to support Joan and the quality of the specialist palliative care she received from this point varied, particularly in the critical final period when her health quickly deteriorated and an already challenging situation for her and her son became incredibly difficult.
Although Joan had access to District Nurses that on the whole were helpful, particularly in administering pain relief, and the social care support service provided appropriate and respectful care, there were many issues with other aspects of her care.
James (on behalf of Joan) was instructed to use the specialist palliative care service advice line and team, which wasn’t as helpful as expected. On numerous occasions, they recommended Morphine Sulphate oral solution, which Joan had explained she was not happy and fearful of taking. On other occasions, they repeatedly called the family to check when appointments or services were scheduled or whether they had started. They were also not particularly helpful when Joan eventually died, having informed James earlier in the day that they would take care of the necessary steps, they instructed James immediately afterwards that he would need to call 111 to request the out of hours GP service to come and confirm the death and then call the District Nurse service to come and disconnect the syringe pump drive.
Their GP service was hit and miss, involving many phone calls, few face-to-face calls and no home visits. Although this was happening during the Covid-19 pandemic, on several occasions it would have been useful if the GP had seen Joan to help with pain management.
A hospital bed was scheduled to be delivered to make Joan more comfortable at home but the planned help to transfer her into the new bed never arrived (a District Nurse eventually volunteered to assist James with this).
Access to medicines was a consistent problem – chemists in their local area (and beyond) struggled to fulfil prescriptions, for example a helpful neighbour sought the correct medicines from multiple outlets, none of which could supply the whole prescription. They also encountered problems with their local chemist not receiving prescriptions when they should have done, at a time when leaving the flat was incredibly difficult.
In the final day(s), the family requested a hospice at home service to provide 24-hour continuous care. They had considered changing this decision and transferring into a hospice but, at this stage, this was no longer an option, leaving them feeling forced to go ahead with the ‘at home service’.
The service was not as expected with all four staff members who attended seeming to lack a level of compassion and common sense. The first staff member arrived late (having called to warn this may be the case) and then entered the flat and bedroom without using Infection Protection Control (IPC), where she did not take off her jacket, wash her hands or put on the appropriate PPE or read the patient briefing notes.
James then left the room to change and rush to the shops. Before departing he returned to Joan’s room to say goodbye and found his mother sat upright and silently reaching out for a drink, whilst the staff member sat in her chair staring down at her mobile phone. The next morning the second staff member arrived to relieve her night shift colleague. She reacted loudly to the presence of Joan’s two cats (that had comforted her immensely during her illness) and the two staff members then preceded to leave Joan unattended and have a verbal altercation about the handover on the doorstep within earshot of Joan.
James understandably then asked both to leave as they were causing unnecessary distress with their behaviours and actions. After allowing the second staff member to re-enter the property and perform her role, he later witnessed them talking on their mobile phone to organise her schedule for the next few weeks in front of his mother.
A third staff member arrived that evening for the night shift and later confirmed that Joan had died after James informed her he believed that was the case. She then sat with Joan whilst James phoned palliative care service advice line, the District Nurses, 111 (for the out of hours GP service) and the funeral directors. She also left immediately after the GP certified Joan had passed away, leaving James, when he realised later, to clean his mother and ensure she was in a dignified state. A further staff member arrived at the flat after this (expecting to perform the next shift) and after being informed that Joan had passed away and there was no point in coming in, requested access to confirm the situation and ‘report back to her boss’.
Finally, as noted above, when Joan passed away, James was left to navigate the ‘system’ with no real guidance or support. In particular, the instruction to use the 111 service to secure a post-death GP visit, led to the awful experience of James having to answer the standard question set (for example ‘is the patient breathing?’) to progress the request for a GP visit.
Despite his experiences, James is keen that they contribute to the understanding of how the system currently works and how improvements can be made so that patients experience the appropriate, respectful and dignified care they deserve.
Gloria’s husband David passed away eight years ago, nineteen years after first being diagnosed with Alzheimer's disease. She cared for David at home until his condition suddenly worsened approximately sixteen months before he died. At this point, on the advice of their hospital consultant that it would be unfair to keep him at home, he was moved to a care home so that additional support could be provided. Prior to him entering the care home, they had been visited by an excellent nurse from the Centre for Palliative Care who helped them work through an extensive list of questions about end of life care and their preferred choices.
Whilst at the care home, David suddenly became unwell and started to shake for no apparent reason (this was later diagnosed as septicaemia). Gloria contacted their consultant and he arranged for an ambulance to move David to St Mary’s Hospital, where he received palliative care for the final six weeks of his life. Although he couldn’t express himself by this point, the staff were very good at listening to and understanding the family’s wishes in the provision of care. The family described the care received as incredible.
Unfortunately, the family did have a needlessly stressful end of life experience following the fall at the care home. The paramedics who arrived to transfer her husband to the hospital informed Gloria that they required the paperwork to prove his wish not to be resuscitated, in the event that his condition deteriorated in the ambulance. The care home could not find their copy of the signed DNR (do not resuscitate) form and the other copy was with the family solicitors and could not be accessed immediately. Fortunately, his condition did not worsen on the journey and on arrival at the hospital, staff accepted the family’s wish that David not be resuscitated. This was a shocking and stressful experience for the family, who believed that this had been discussed and correctly recorded previously.
The experience led Gloria to become involved as a lay advisor in the development of end of life (Coordinate My Care) plans, working with clinicians and the Royal Marsden to improve the plans/system and becoming a strong advocate for end of life planning. She was disappointed to find that, years later, the sharing of end of life planning information within the healthcare system still leaves much to be desired. Gloria has her own end of life care plan that she had completed with her GP. In January this year (2022) she was taken to hospital suffering from septicaemia and pneumonia. The paramedics that collected her from her home were unable to access the plan and she was later approached by a doctor at the hospital (who clearly could not or had not tried to access her plan) to enquire as to whether she wished to be resuscitated should the need arise. Thankfully she recovered and returned home but believes the sharing of information of patient and their families wishes urgently requires addressing within palliative care services (and the wider health service).
Madhu lost her 97-year-old mother two years ago. She was originally admitted to hospital after a heart attack and had a pace maker fitted. Whilst at the hospital, the family received different information from different clinicians and eventually found out she was to be discharged home, even though she “couldn’t lift a glass of water”. Prior to this, her care needs were not discussed with the family and there was no mention of carer support being put in place at home following her discharge.
On the day that equipment was delivered to the home, Madhu was informed by the consultant that her mother could not be discharged as she was having organ failure and she was instead kept in hospital. The family asked about hospice care and was told this would be no different to that provided in the hospital. In general, family wishes were not respected. She was kept on a general ward, though she was eventually moved to a separate room (after 2 days of family requests). Whilst in the general ward, there were not enough staff to clean her, so Madhu had to do this herself. The way she died and was treated still hurts terribly three years later.
A participant at one of our recent engagement events currently cares for her father at home (where he wishes to stay as long as possible).
He ended up being taken into hospital, where it took two days for them to contact her and enquire as to what medication he was on. She had to try and find out via their GP and the hospice advice line, which was very distressing. He also wasn’t eating at the hospital because his menu/diet was not appropriate. He didn’t recognise what was served as food (and the hospital seemed unaware of its own specialist menu or why it existed, i.e. for patients like this). She ended up cooking three meals per day at home to then take into the hospital for him. She eventually forced his discharge to bring him back home so she could care for him better there.
St Luke’s provided very helpful information and a booklet (through Dementia Cares) helped her list out some key facts about her father’s likes/dislikes/ daily schedule (e.g. what he will eat, when he wakes, when he goes to bed etc).
Her biggest anxiety as a family carer is that they will be put her father into hospital again – she stated that she should see hospital as a safe place but it feels like the worst place possible – he’ll go in and it will be like a black hole with her having no idea who will be caring for him and a complete information blackout. This places huge anxiety on carers and families.
Jim and his wife, Patricia, were both experienced healthcare professionals and worked as GPs in North West London. Pat developed CJD (Creutzfeldt–Jakob disease) in 2018 and was predicted to die within six months (95% of people with CJD die within 12 months). She actually lived for 18 months with the support of Jim, their family, friends and carers.
Given Jim’s background, from the outset he intended to play a very active role in deciding the treatment and care that could best help Pat but this proved difficult within a system that is not used to having their common practice challenged.
On the positive side, Jim and the family found the district nurses, carers and GP to be outstanding in their provision of palliative care services. In particular, the district nurses and carers worked hard to understand the family’s wishes and the type of end-of-life experience they were attempting to give Pat, listening to them with an open and constructive attitude, rather than immediately judging their care preferences.
However, they found other community service practitioners (e.g. physiotherapist, tissue viability nurse, occupational therapist) to be far less positive. These service providers believed that Pat should remain in bed at all times. Jim would bring her down each morning to join family and friends for visits, music and parties, even taking her out onto the patio to enjoy the sun shine on warm days.
Although Pat could no longer communicate, Jim could tell that she was happier in the family environment and knew that she would want this if she were still able to express herself. In this way she was able to see many engaging happy visitors (they had a wide network of friends and family, with over 100 people on their WhatsApp group) and have her hand held, all of which he judged would be better for her than a quiet room upstairs with a singular carer or family member for company. Jim is certain that this impacted on her longevity and helped her keep going during that final 18-month period.
This was one of many examples in which an insistence on the administering of ‘standard’ approaches and treatment protocols clashed with the family’s wish to do what they believed was best for Pat. When Pat developed two grade-three pressure sores whilst lying on a hospital bed (at home) following the failure of recommended treatment, the family developed their own plan (with the district nurse); this healed the sores and they didn’t return (which they accomplished despite much of her body weight lying on these points). These disagreements eventually led to a series of safeguarding complaints being raised against Jim - each of which was subsequently dismissed/refused by the safeguarding team.
Pat passed away peacefully at home, without needing a single night in hospice or hospital. The sun was shining through the window and her close family with her. But getting to that point involved many stresses that were unnecessary and could have been avoided.
There are a number of lessons that Jim takes from this experience that he thinks must be acknowledged or reflected in any changes to community-based palliative care services (or wider health services):
Empowerment - we need a vision (that we spread far and wide) that encourages people to think about the end-of-life period as an opportunity for empowerment of the whole situation, rather than thinking simply of the comfort of the individual or handing everything over to health professionals. People need to be helped to die at home in the best way possible for them – not just according to as professional’s protocol. Not everyone wants a quiet room where they are visited by carers three times a day. Some want to be with their family, friends and the things they love and enjoy. Such empowerment can build a compassionate community (e.g. the friends, work colleagues, school pupils/parents, faith groups etc) around the person who is dying; this can continue to develop after the person has died.
Guidance/permission for core caring team and extended network – people may not know what to do to help and may not feel allowed to do things. Guidance can change this. This guidance needs to speak directly to the core caring team (often the close family and carers) and recognise the immense pressure they are often under, but it also needs to speak to the extended friendship and family support networks and encourage them not to feel awkward and to have permission to come forward with the many ways they may try to help (e.g. from meals to child care/support etc). Permission also extends to the way in which clinical staff speak to the patients’ family/carer – sometimes simply reinforcing that they are doing a good job in trying circumstances is exactly what they need to hear and gives them the confidence to keep doing their best for the patient, particularly when the choices they face can be so difficult.
Integration – one major frustration is that currently end-of-life care can be perceived as a comprehensive mess with many examples of a lack of join-up between primary care and community care services. As a minimum, going forward the different service providers must be required to speak to each other and seek to develop teams to work together around the patients’ needs in the home environment with case conferences being a routine part of this.
Accountability/supervision/teamwork – the way in which accountability and supervision work within our complex system of many moving parts are currently inadequate or too slow. When families are empowered to make more of their end-of-life decisions individually and specific to their needs, inevitably these may clash with our current system of expected ‘one-sized’ model. We therefore need greater clinical supervision and guidance for the individuals within the system that have to make decisions or challenge the decisions of others (e.g. attending therapists or specialist nurses etc). Also we need to enable greater input and supervision from district nursing teams who often know far more about what is happening in the patients’ home/life but who are perceived as less senior than some other staff working within community services.
Handling conflict – dying will bring out the best and worst in people – some family, friends and even care staff will disagree with the approach you choose to take and claim it’s bad for the patient, perhaps even ‘killing’ them. Sensitive discussions about different opinions rather than accusations are important. If possible, people need to have difficult conversations about end-of-life care preferences early, so families can agree a way forward, get their affairs in order and lessen the likelihood of ongoing disputes further complicating the stressful late period of life for the patient and their main carer(s).
If you have a story you would like to share to help us improve community-based specialist palliative care please email firstname.lastname@example.org