When a terminally ill patient develops an acute problem, risky emergency treatment may seem futile to medical staff. But sometimes patients are not ready to die. What is a good death in such circumstances and how do we achieve it?In palliative care we aim to provide good symptom control and ultimately a good death. Patients and their families need time to prepare for death. Sometimes acute situations arise that can interfere with this process, leading to a distressing and undignified end. Decision making in emergency situations is difficult. We use a case history to illustrate the problems surrounding such decisions.
Case historyA 19 year old man was diagnosed with rhabdomyosarcoma of the prostate with lung metastases and bone marrow disease. He was treated with four chemotherapeutic regimens. Although the pulmonary metastases completely resolved, the disease progressed at the primary site and regional lymph nodes. He had multiple complications from the chemotherapy, which resulted in lengthy hospital admissions. Controlling his pain, particularly neuropathic pain in his left leg, was difficult.He had many plans for the future and promising career prospects ahead of him. Despite several attempts, we were unable to open a discussion with him about his prognosis or end of life issues in the days preceding the emergency event.While he was an inpatient on the palliative care ward at the tertiary referral unit he developed intermittent melaena sufficient to require blood transfusion. Gastroscopy showed no abnormality. Angiography was arranged for the following day at a nearby hospital to locate the bleeding point. That evening, however, the rate of bleeding became catastrophic, and an immediate decision had to be made about his management. He was transfused with large volumes of blood products. By midnight, it was clear that he would die without further intervention. At this point he was fully alert and oriented, aware of what was happening and of the consequences of continued blood loss.Staff from different disciplines were present-an oncology registrar and senior house officer, a haematology registrar, a surgical registrar, a palliative care consultant, and ward nursing staff. In addition the oncology, surgical, and anaesthetic consultants were contacted at home for advice. Both the patient's parents were present.The nearby hospital was unable to perform angiography and embolisation that night because it had no critical care beds available. By 3 am we had found another hospital with facilities to perform the procedure, but it was several miles away. Our patient was faced with a traumatic and frightening death. The dilemma was whether to sedate him on the ward or take the risks of transferring him to another unit for a potentially life saving procedure, despite the terminal phase of his illness.
What is a good death?In terminally ill patients it is not only quality of life that is important but the concept of a good death.
1Steinhauser et al evaluated factors considered important at the end of life from the perspect...