The last wish of a patient with end stage chronic obstructive pulmonary diseaseBMJ 2008; 337 doi: https://doi.org/10.1136/bmj.a2701 (Published 08 December 2008) Cite this as: BMJ 2008;337:a2701
- Daisy J A Janssen, nursing home physician and palliative care consultant1,
- Ton P G Alsemgeest, nursing home physician and manager1,
- Guy A M Widdershoven, professor of ethics of health care2,
- Emiel F M Wouters, professor in respiratory medicine 34,
- Jos M G A Schols, professor in nursing home medicine 5,
- Martijn A Spruit, staff functionary6
- 1Central Department of Treatment and Care, Proteion Thuis, 6085NM Horn, Netherlands
- 2School for Public Health and Primary Care, Care and Public Health Research Institute (CAPHRI), Faculty of Health Medicine and Life Sciences, University of Maastricht, 6229ER Maastricht, Netherlands
- 3Department of Respiratory Medicine, MUMC+, 6229HX Maastricht, Netherlands
- 4Centre for Integrated Rehabilitation of Organ Failure (CIRO), 6085NM Horn, Netherlands
- 5Department of General Practice, Faculty of Health Medicine and Life Sciences, University of Maastricht, 6229HA Maastricht, Netherlands
- 6Department of Research, Development and Education, Centre for Integrated Rehabilitation of Organ Failure (CIRO), 6085NM Horn, Netherlands
- Correspondence to: D J A Janssen
- Accepted 14 July 2008
Our patient was 55 years’ old when she was admitted to the nursing home with end stage chronic obstructive pulmonary disease (COPD) in November 2007. She had had the disease since 1997, and she had participated in a pulmonary rehabilitation programme seven times (in 1998, 2000, 2001, 2002, 2005 (×2), and 2006). In 2000 she underwent lung volume reduction surgery. That same year she also had a stroke, which resulted in paralysis of her left arm and pain in the left side of her body. She was prescribed long term oxygen therapy in 2006.
In February 2007, she was admitted to the nursing home for an intensive patient tailored interdisciplinary management programme, which improved her health status and daily functioning. She was sent home in April of that year. After discharge, however, she was admitted to the hospital several times because of acute exacerbations. She was prescribed non-invasive positive pressure ventilation because of progressive respiratory failure.
At her second admission to the nursing home in November 2007, she was hopeful that intensive treatment and physical training would again enable her to improve her daily functioning and allow her to live in her own home. However, within two months she deteriorated progressively, despite an intensive patient tailored interdisciplinary management programme aimed at improving health status and daily functioning. Discharge was not possible.
Because of the progressive decline in her health status and increasing daily burden of symptoms, a palliative approach was increasingly offered alongside curative treatment. It consisted of managing daily symptoms and care needs, and discussing prognosis and advanced directives. She had already decided to refuse resuscitation or admission to an intensive care unit. Now, she also refused admission to hospital in case of acute illness.
Two months after her second admission to the nursing home, she first expressed her wish for euthanasia to her treating physician at the nursing home, in the presence of her closest family. She wrote in her living will, “Since 1997, I am a COPD patient. In 2000, I had a stroke. Since 1997, I have been constantly going in and out of hospital. Every three weeks I have an infection and every time I have to fight to recover. Every time I get worse. I can’t fight any more. I am so tired. My shortness of breath becomes worse every time. If I have to go to the bathroom, I have to wait for half an hour before I am able to leave. I am afraid of going to the bathroom. Also the pain becomes worse. I have always said that my disease should not become unbearable. Now the moment has come that my life is nothing but suffering, I want this to end. My greatest wish is not to suffer any more.”
Because of her increased pain and dyspnoea, the management of symptoms was intensified in the days after her request. Psychosocial and spiritual end of life needs were also dealt with. Thirteen days after she expressed her wish to die, euthanasia was performed in the presence of her closest family, after consultation with a psychiatrist and an independent doctor.
A sister’s perspective
Since 1997 my sister has had lung disease. Gradually, her situation became worse. However, she never complained. She was always grateful for everything we, as a family, did for her. Living in her own home became more difficult during the last years. She was anxious at home and called me almost every day. In the nursing home she felt safe.
On the day she told me that she wanted to ask her doctor for euthanasia I was angry with her. I told her that I didn’t want her to do that. I did not understand her wish. I told her that I wanted to do everything for her, that I didn’t mind the travelling to the nursing home. I loved her and wanted to take care of her. However, she kept saying she did not want to live like this any more.
In the days after we talked about this, I gradually started to understand her wish. She was suffering every day. Every day she had to fight against her breathlessness and her pain. She did not want to ask other people to help her with everything she had to do. Although it was difficult, I accepted her wish.
The night before the euthanasia was very difficult. I was constantly watching the clock and counting the hours—the hours she had left. On the morning that euthanasia was carried out we went for her last cigarette together. It hurt me to see how much effort it took to smoke just a little bit of this cigarette.
I was sitting next to her when she died. She died very quickly and quietly. I am grateful that her last wish was honoured, that she does not have to suffer any more, and that she died the way she wanted. However, I miss my sister so much, I miss her calling me and I miss taking care of her, every day.
A medical perspective
In the Netherlands, euthanasia is defined as termination of life by a medical practitioner at the explicit request of the patient. Euthanasia may allow a patient to end his or her life in dignity after having received every available type of curative and palliative care.
However, euthanasia is legal only in a patient who is suffering unbearably, with no prospect of improvement, and if the following statutory criteria of due care are fulfilled.
Explicit request of the patient
The attending doctor must be satisfied that the patient has made a voluntary and carefully considered request. Our patient had discussed euthanasia years ago with her treating chest physician and her general practitioner. Since then, she repeatedly said she wished to die if her life was unbearable with no chance of improvement. Two weeks before her death, she asked explicitly for euthanasia. Her request was not made under pressure from or influence by other people, such as her family or friends. She expressed her wish in the presence of her partner, mother, sisters, and daughters, who respected her wish. She completed a living will in which she declared that she wished to die of euthanasia because her suffering was no longer bearable. A week after her explicit request she saw a psychiatrist to exclude the possibility that her wish to die was a symptom of a depressive disorder. The psychiatrist declared that she had no symptoms of a psychiatric disease that could have influenced her wish for euthanasia. Moreover, the psychiatrist declared that her request was voluntary and well considered.
In the 13 days between her request and her death she discussed her wish to die, the possibilities for end of life care, and the things that were important in her life with her doctor almost every day.
Suffering and no prospect of improvement
The attending doctor must be satisfied that the patient’s suffering is unbearable, and that no prospect of improvement exists. Our patient clearly had no chance of improving, and her suffering was unbearable. The main reason for this was her progressive decline in daily functioning and increasing dependency on care givers and loved ones. She needed help with almost all tasks of daily living. She had dyspnoea at minimal exercise and sometimes even at rest. Since she had a stroke in 2000, she had neuropathic pain in the left side of her body, which was hard to treat effectively. For several months she also had thoracic pain.
An informed patient
The attending doctor must have informed the patient about his or her situation and prospects. In the nursing home our patient talked with her doctor about her disease and its expected trajectory, which would probably be characterised by a further decline and punctuated by acute deteriorations in health status and daily functioning. She fully understood the nature of her condition, her prospects, and the possibilities for treatment.
No reasonable alternative
The attending doctor must have concluded, along with the patient, that no reasonable alternative exists in the light of the patient’s situation. The main reason for our patient’s wish for euthanasia was her progressive decline in daily functioning and increasing dependency on care givers and loved ones. There was no possibility that her daily functioning would improve.
Her lung function had deteriorated over the past few years. A year before she expressed her wish for euthanasia, her forced expiratory volume in the first second was only 26% of predicted values. Her chronic obstructive pulmonary disease was optimally treated according to the current international guidelines—she received long term oxygen therapy and non-invasive positive pressure ventilation. She had participated in seven comprehensive inpatient pulmonary rehabilitation programmes. In 2000, she had lung volume reduction surgery. She had recently deteriorated, despite an intensive patient tailored interdisciplinary management programme. Lung transplantation was not possible because she smoked.
She also mentioned that dyspnoea and pain contributed to her suffering. In the days after her request for euthanasia, her dosage of opioids was increased until the pain and dyspnoea were optimally treated. However, her wish for euthanasia became stronger every day. The optimal management of pain and dyspnoea did not improve her physical functioning and did not reduce her dependency. In the days before her death, her physical functioning declined quickly so that leaving her bed became harder every day.
The attending doctor must have consulted at least one other independent doctor, who must have seen the patient and given a written opinion on the due care criteria, as mentioned above. Twelve days after our patient’s request for euthanasia, she was visited by an independent doctor—a general practitioner trained in performing consultation for euthanasia. He assessed the four due care criteria explained above and reported that these criteria were met.
Medical care at termination
The attending physician must terminate the patient’s life with due medical care and attention. After the independent doctor’s visit, the euthanasia was planned for the next day. Once the plans were made our patient seemed to be quiet and peaceful. She said she had finished everything she wanted to do and that she had completely accepted her situation. On the day of her death, her family was with her to say goodbye. In the presence of her mother, sisters, daughters, and partner, she died quickly and quietly after intravenous infusion of a barbiturate to induce a coma, followed by a neuromuscular relaxant, as per protocol.
After the patient died the attending doctor completed a report and notified the municipal pathologist of this instance of death from non-natural causes. The pathologist viewed the patient. He informed the public prosecutor, who gave consent for burial. The pathologist then sent his own report, the attending doctor’s report, the independent doctor’s report, and the patient’s living will to the regional review committee. This committee—a legal expert, a medical doctor, and an expert on ethics—used these documents to assess whether euthanasia had been carried out in accordance with the due care criteria.
Three weeks after euthanasia was carried out, the review committee informed the attending doctor that she had met the statutory due care criteria for euthanasia and would not be prosecuted. A few weeks later the doctor discussed the patient’s life course, her disease, and her death with her family and loved ones, who were grateful that her last wish had been honoured.
What can we learn from this case?
Euthanasia is defined as termination of life by a medical practitioner at the explicit request of the patient. In 2002, in the Netherlands, the Euthanasia Act legalised euthanasia in a patient who is suffering unbearably, with no prospect of improvement, if all the due care criteria are fulfilled. Euthanasia is used most often in patients with malignant disease. However, euthanasia may allow a patient with end stage chronic obstructive pulmonary disease to end his or her life in dignity after having received every type of curative and palliative care available.
Cite this as: BMJ 2008;337:a2701
This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley () for guidance.
Funding: DJAJ is supported by Proteion Thuis, Horn, Netherlands; grant 3.4.06.082 of the Netherlands Asthma Foundation, Leusden, The Netherlands; Stichting Wetenschapsbevordering Verpleeghuiszorg (SWBV), Utrecht, Netherlands.
Competing interests: None declared.
Provenance and peer review: Not commissioned; not externally peer reviewed.
Patient consent not required (patient anonymised, dead, or hypothetical).