Let's take a look at appropriate end of life care.
The case of Mr. Jones
Mr. Jones, aged 88, was referred to the hospital for the fourth time that year with dyspnoea. He was diagnosed with pneumonia. His medical history mentioned myocardial infarction, chronic heart failure, and a pacemaker. Two years earlier he had made a written will with a non-resuscitation and non-intensive care statement. The next day he became progressively dyspnoeic and developed kidney failure. He was transferred to the ICU and underwent a pleura fluid drainage. The clinician hold the opinion that the patient recovered well. Mr Jones however found his quality of life unacceptable. Three months earlier he was independent, drove with his car to his weekly billiard meeting, to his children, did his own shopping and cooking. There were no prospects of improvement of his condition and he expressed the wish to stop the pacemaker. This would without any doubt result in progressive heart failure and death.
Being the family physician, the clinician called me. I knew Mr Jones as a modest, friendly man without any cognitive impairment. A real family man with few demands, enjoying life. This knowledge made me supportive of the patient’s wish. In addition the consulted psychiatrist judged Mr. Jones capable to make decisions. The relatives supported his wish. In spite of these collegial advices the clinician refused to organize the switch-off of the pacemaker. Mr. Jones was discharged from hospital, with maximum home care, and non-hospitalization and non-treatment agreements.
Who is in charge at the end of life?
Palliative care is aimed to increase the quality of life of patients and relatives who are faced with life threatening diseases. End-of-life care can only be considered appropriate when it is in line with the wishes and expectations of the patient. It is the task of the attending physician to talk timely with the patient and his relatives about proposed interventions related to the patient’s perspective on quality of life. The attending physician should be aware of the presence and content of a written will. In addition, the patient and relatives should be informed about the effects of medical treatment in order to make informed decisions when medical interventions no longer add to quality of life. Patients’ wishes should be at the centre of end-of-life care. This requires a physician who timely gives the patient the opportunity to consider which type of care best suits to achieve his or her wishes regarding the end-of-life. This attitude supports a well-informed patient centred decision-making, acceptance and closure.
Norms, values and knowledge of physicians
The clinician in this case thought that withdrawal of the pacemaker meant termination of life on request of the patient. She phoned me as the family physician to gain support for her opinion. As an expert in end-of-life decision-making I explained her that (in the Netherlands) a pacemaker is seen as a medical intervention and that a patient has the right to abandon this treatment. In addition I told her that I was prepared to fulfil his request at home. This information did not support her in the discussion with Mr. Jones and his relatives. Nor did the conclusion of the psychiatrist that Mr. Jones was not suffering of depression and mentally capable. The pressure on the clinician increased when the attending cardiologist appeared prepared for pacemaker withdrawal. The knowledge and opinions did not change her opinion and she stood by her personal norms and values. The question thus arises what the role of the personal norms and values of the professional should be in patient centred end-of-life care. How do we respect the patients’ wishes in a professional way when they are in conflict with our own norms and values.
An appropriate end-of-life
Two days after Mr. Jones was discharged from the hospital, at his explicit voluntary and well-considered request, the pacemaker was switched off. Mr. Jones died at home, surrounded by his love ones, under palliative sedation, as a result of progressive heart failure.
This blog is one of a series from the 43rd North American Primary Care Research Group (NAPCRG) Annual Meeting, which runs from October 24-28, 2015, in Mexico. CMAJ is one of the sponsors of the meeting.