Select Committee on Health Written Evidence


Supplementary memorandum by Marie Curie Cancer Care (PC 35B)


  The case studies show examples of where end-of-life care has met—and has not met—the expectations of patients and their carers.

  These are real cases—not composites or simulations. They have been supplied by Marie Curie Nurses working in the community or at a hospice.

  Some personal details have been changed to protect the identity of the patients.


Case 1

  Mrs D from the South West,

age 39 years. Diagnosis: Primary breast cancer with liver, lung and brain metastases. Living at home with husband and four year old daughter.

  At the end of active treatment/diagnosis of terminal stage, she had expressed her adamant desire to remain at home to be with her daughter.

  In common with most young patients she remained independent for as long as possible, with her husband and sister gradually attending to more of her physical and practical needs.

  Sudden deterioration in her condition stretched their capacity to cope and necessitated professional intervention for the final phase (last four days of life).

Services involved:


  District Nursing Team

  Hospice Community Nurse Specialist

  Marie Curie Cancer Care

  Hospice at Home Team

  Nursing Agency

  Hospice Social Worker.

  The GP was informed of Mrs D's deterioration by her husband. GP visited to assess and provide increased medication. Requested District Nurse (DN) to visit for support and daily management.

  DN alerted Hospice Community Nurse Specialist who visited to provide emotional support to patient and family and liaised with GP on symptom management (using her specialist knowledge to give advice on appropriate medication regimes etc).

  DN referred patient to Marie Curie Cancer Care for daytime support and respite for carers, as Mrs D was restless/anxious during the day.

  Marie Curie Nurse (MCN) attended for 7 hour daytime shift, allowing her time to fully assess needs. Recognised further deterioration in Mrs D's condition and increasing strain on family. Informed District Nurse of need for night-time care.

  Hospital bed delivered next day—arranged by DN.

  Hospice at Home (H@H) team contacted to provide overnight care as no MCN available.

  Hospice Social Worker informed by MCN of need to provide emotional support for Mr D (by telephone and one visit) in helping his daughter to understand that her mother was dying.

  Marie Curie Nurse attended for a seven hour day shift the following day. Hospice at home Nurses provided further two nights of cover.

  District Nurses continued to attend once a day to maintain continuity of care and co-ordination of services, and bring any necessary extra equipment etc.

  Patient's husband and sister were able to remain involved in her practical care. Patient and family confident that symptoms were being well managed and felt supported enough to cope alone for short periods, well aware of whom they could call. This gave them space and privacy to adapt to the changes.

  The child was able to spend time with her mother in familiar surroundings, with the minimum possible impact on her daily routine.

  A qualified agency nurse RGN provided cover on the last night of patient's life as neither H@H nor MCN available.

  Patient able to die peacefully at home as she had wished. Family felt supported. Close friends visited at intervals throughout final days to say goodbye.

Case 2

  Mr P from the South West, age 52 years. Diagnosis: Head and Neck cancer.

  Living at home with wife and teenage sons. Coped alone until final two and a half weeks. Mr P experienced suddenly increasing weakness and difficult symptoms.

Services involved:


  District Nursing Team

  Hospice Community Nurse Specialist

  Marie Curie

  Hospice at Home Team

  GP made same day visits to monitor and control pain as requested.

  GP ensured that overnight emergency doctors were familiar with patient's case in case call-out was necessary by faxing daily up-dates.

  DN visited daily for dressing neck wounds. Identified family fatigue. Referred to Marie Curie Cancer Care for daytime care as patient unable to be left alone (having significant bleeding episodes) and wife needing a break.

  Two day shifts per week from Marie Curie Nurses were organised—allowing wife to go out. MCN had time to fully assess situation and perform daily care outside capability of family due to patient's weakness, eg assisting him with bath and hair wash.

  MCN liaised with GP over pain management and control of vomiting. She was on hand to promptly respond to the patient's rapidly reducing ability to speak, and arranged for a speech therapist to deliver a Lightwriter machine that maintained effective family communication for a valuable 48 hours.

  Mr P was able to spend Christmas at home with his family and died in January.

  They felt confident to spend Christmas day alone (after short District Nurse visit) because Mr P's symptoms were well managed and they were aware of the help that would be available if necessary.

  MCN informed DN of need for increased practical and emotional home care in final two days of life. H@H team provided a qualified nurse for evening and overnight care. Hospice Community Nurse Specialist provided telephone support and advice to family and the professionals involved.

  Having a nurse in the house enabled Mr P's sons to ask questions and express fears and anxieties whenever they felt the need. This facilitated family coping and was a great relief to Mrs P.

  Patient able to remain in the home he had hand-built (he was a carpenter) and be with his sons who were reluctant to visit him whenever he was in hospital, due to embarrassment over his gross disfigurement.

  Mr P died peacefully at home with his family present.

Case 3

  Mrs J from Newcastle, a 56 year old lady with advanced ovarian cancer who had been admitted to a local hospice with complex symptomatic needs. Unfortunately her condition deteriorated rapidly and it became apparent that she was going to die very soon. The patient was aware of this and rather afraid, however, she did make the decision that she wished to die at home in her own bed, with her family around her.

  At 2.00 pm on Friday afternoon this lady decided she wanted to go home as soon as possible as she was afraid she may die over the weekend. The hospice staff "pulled out all the stops" and liaised with several other agencies to facilitate this patients discharge home that day. Ambulances were arranged, the district nursing service were contacted to ensure help both in the form of practical help and equipment were on hand for this lady to be nursed at home. The family were very willing to help in any way they could. District Nursing Service also liaised with the Marie Curie Community Nursing Service to ensure this lady and her family were able to be supported at home. Patient was eventually discharged home successfully at 5.00 pm that day (within 3 hours of the patient's request).

  The lady subsequently died very peacefully at home with her family around her three days later. Her family were delighted not only about the care that she had received but about that fact that her last wish to die at home had been honoured.

Case 4

  Mrs J from Surrey, the patient, a young married woman with two young children, desperately wanted to live to see her son's birthday and desperately wanted to stay at home. She was in her own ordinary double bed and was adamant that she did not want her home turning into a hospital with lots of medical equipment. Marie Curie Cancer Care's Community Supportive Care team—based at the hospice was finding it increasingly difficult to manage her care in the double bed—especially since she had an unstable spine and needed severe pain control. Some would argue the easy option would have been to transfer her to a hospice or hospital or keep her at home heavily sedated on the unsuitable bed.

  However, the team wanted to bring a hospital bed to her home. This was discussed with the patient and her family. They were advised that without the introduction of specialist equipment into the home, an admission to a hospital or hospice bed was the inevitable outcome.

  The bed was delivered by two ambulance crews who came specially to move the patient into the bed in the living room. The patient's District Nurse also cancelled a dinner date to ensure she could support the CSC Team. As a result of this decision the woman was able to share her son's birthday and see him open all of his presents. The CSC team also offered practical and emotional support to the husband. He was a deeply religious man who still hoped that God would intervene but they were able to explain to him that she was in the process of dying and supported him by explaining to him exactly what would happen. The woman died comfortably with her husband holding her hand at 11.30pm on the night of her son's birthday.

  Good symptom control, practical support and emotional support ensured that the patient received a good death even in such tragic circumstances.


Case 5

  Mrs N from the South East, the patient, a woman in her 70s, wanted to remain at home. Her husband was also very keen that she should have her wish. She was supported by her District Nurse and Marie Curie Cancer Care's Community Supportive Care team and her symptoms were controlled with a syringe driver. The CSC Team visited her twice a day but were unable to do so "on demand" in the evenings. There was also no District Nurse cover in the area where she lived after 10pm.

  One evening the patient started to get a rattling cough reflex—a common symptom that occurs near to death in c50% of patients. The husband had not been briefed to expect this by the GP, District Nurse or CSC team. (The issue of the "death rattle" is addressed in the Liverpool Care Pathway and should always be discussed in advance with carers, who should be given a leaflet covering changes which occur before death, which include diminished need for food and drink, changes in breathing and withdrawing from the world).

  The husband began to panic and tried to contact the CSC team but may have dialled the wrong number. He also called NHS direct and was cut off mid conversation. In total panic her dialled 999 and the ambulance crew attending assumed the patient was choking, even though the husband told them about her ongoing care.

  The patient, by now distraught, was taken to Accident and Emergency. The hospital's palliative care team eventually ascertained her condition and got her settled. She died the following morning in a bed attached to the casualty department. The husband was very angry and felt he had been betrayed.

Case 6

  Mr W from South Wales. Patient: a 77-year-old man who lived alone. His nearest family lived 15 miles away. He was admitted to a Marie Curie hospice for symptom management—was very weak, suffering from constipation, abdominal distension and extreme nausea. He was adamant he wanted to go home to die and told nursing staff and the admitting doctor of his wishes.

  His condition got worse so hospice staff asked the District Nursing team if they could hurry things along to ensure he was supported at home. They said it was difficult to provide the statutory five calls a day cover and would need social services to look after his nutritional needs. Social services argued it wasn't their responsibility because he needed nursing care. Basically there were huge delays in finalising the patient's care because of in-house financial politics between the DN Service, Social Services and the Continuing Care Coordinator.

  The patient's condition deteriorated even further and he died in the hospice.

Case 7

  Mrs A from the East Midlands, the patient was a 54 year old lady with cancer of the oesophagus and a tracheotomy that she cared for herself. Marie Curie Nurses attended over many shifts and one in particular made great effort to contact the DN, she had previously worked as a "Head and Neck" specialist and really felt this lady might haemorrhage, that the family was not prepared for such an eventuality and there was nothing in the home to cope with such an eventuality.

  Despite conversations with the DN, nothing was put in place. It was harder to leave a note as the notes can be accessed by patient and family when they are left in the home. This lady was often discussed at clinical supervision. MCNs were concerned at the circumstances she was caring for herself in but accepted it was her choice and way of life. They were concerned at the lack of affection and communication between the husband and patient.

  They were also curious at the bereavement cards on display in the home and eventually the patient and husband opened up (separately) to explain that their son had died of leukaemia in January. This explained some of the tension and would have been useful information to have received from the DN.

  One night the lady self cared as normal, with some assistance. At 6.00 am the MCN present helped sit her on the commode as normal and noticed a trickle of blood from the tracheotomy site. This particular nurse was not aware that haemorrhage might be an issue and there was still nothing in the house to suggest this may occur. She could not get the lady back to bed as she was too weak, so she awoke the husband. Together they put her to bed but she was now very ill and unconscious, blood had filled the commode and gone to the floor.

  The nurse was trying to work out if their were any drugs she could give, as the patient had self administered to this point and get some towels, meanwhile the husband panicked, not unreasonably, and called the ambulance. They arrived quickly but the MCN felt the patient had died, the husband was extremely distressed as he was not prepared for the bleed or his wife dying, however the paramedics explained they had to resuscitate. This was upsetting for everyone, the nurse and husband could hear the defibrillator being used in the ambulance. They followed to A&E where the lady was pronounced dead.

  It took a long time for the nurse to accept she had done the best she could. Certainly the availability of emergency drugs and a written DNR in the home would have helped, it would mean that someone would have had to have had a significant conversation and prepared this family. It would have given the paramedics the permission they needed to leave this lady at home.

June 2004

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