2017-31, due care criteria not complied with

Non-straightforward notification, suffering without prospect of improvement.

The patient, a woman in her eighties, had been diagnosed with chronic narrowing of the airways (chronic obstructive pulmonary disease, or COPD) 30 years before her death. She was treated with inhalation medication, but to no effect.

In the final year before her death, the patient was increasingly short of breath, especially if she exerted herself. She refused to be treated with extra oxygen.

In addition, since 2002 the patient had been suffering from age-related hearing loss, and since 2014 from loss of appetite after losing her sense of smell and taste. She also experienced some disability due to her fingers being bent. This was partly due to hardening of the skin and partly due to swelling in the tendons causing ‘trigger finger’ (the finger gets stuck in a flexed position due to inflammation of the tendon sheath and of the tendon, but regularly suddenly straightens again. Injections initially had a positive effect, but after a while they no longer helped.

The patient’s suffering consisted of the cumulative effect of all her health issues. Shortness of breath was the main problem, especially if she exerted herself; she could only walk short distances and was severely fatigued. She was also experiencing increasing social isolation. She suffered from the knowledge that in the near future things would only get worse.

The patient feared she would no longer be able to drive or to live independently, that she would become dependent on carers and would have to leave her home within the foreseeable future. She dreaded this prospect. Having led a very independent life, the patient experienced her suffering as unbearable.

The physician was satisfied that this suffering was unbearable to her, without prospect of improvement according to prevailing medical opinion, and that there were no alternative ways to alleviate her suffering that were acceptable to her.

When the notification was discussed at the committee meeting, questions arose concerning the disorders from which the patient was suffering and which prompted her request for assisted suicide. The committee also wanted to speak with the physician about the options he offered to alleviate the patient’s suffering, the fact that the patient was not really open to those options and the physician’s response to that.

The physician reported that the patient had been suffering for years from narrowing of the airways (COPD), for which she was treated with inhalation medication. There had been no further diagnostic tests since 1986. In the early stage of her symptoms, the physician suggested several times that he could refer her to a lung specialist for further tests, with a view to making a diagnosis and establishing treatment options. The patient declined.

The patient had already drawn up a euthanasia directive in 2001, and since 2015 she had discussed her wish for euthanasia with the physician many times, and signed new advance directives. The physician never felt forced to carry out her wishes. As he was always used to doing when he received a request for euthanasia, in this situation too he kept searching for alternatives.

For instance, he very specifically discussed with her the option of moving into an apartment with no stairs in her immediate neighbourhood. She was only willing to consider this if euthanasia could not be performed because, for instance, an independent physician was of the opinion that not all the statutory due care criteria had been met.

Termination of life, however, was what would make her happiest. She  resolutely refused an alternative treatment option with extra oxygen. In view of the above facts and circumstances, the committee found that the physician could be satisfied that the patient’s request was voluntary and well considered, and that she was suffering  unbearably.

As regards the due care criterion of suffering without prospect of improvement, the committee noted the following.

From the records and the interview with the physician, the committee understood that the main cause of the patient’s suffering was shortness of breath that could not be treated satisfactorily. This limited her current and future mobility and independence to such an extent that she had asked the physician for euthanasia on several occasions.

In general, the committee expects a physician who receives a request for euthanasia due to suffering that the patient experiences as unbearable to first of all ascertain whether the cause of that suffering has been established and treated adequately. In the present case, the committee likewise expected the physician to ascertain whether the cause of the shortness of breath had been established sufficiently clearly and whether the patient had been treated adequately.

From the records and the physician’s further explanation, the committee understood that the patient had suffered from asthma / chronic narrowing of the airways (COPD) for around 30 years. On that basis, the physician treated her with inhalation medication and supported her within the (primary care based) chronic care programme for patients with chronic narrowing of the airways.

Treatment with medication to widen the airways had insufficient effect, if any. Over the years, the physician had the patient undergo various lung function tests. These showed variable exhalation difficulties. This could tie in with asthma/COPD.

However, the committee noted that the patient did not respond to the medication she was prescribed on the basis of the working diagnosis of chronic narrowing of the airways (COPD) and that her shortness of breath was becoming worse. This led the committee to doubt whether her shortness of breath was indeed caused by COPD.

Although lung function tests may support a suspected diagnosis, they are insufficient to establish a diagnosis of COPD or asthma. That requires further tests by a lung specialist. Although the physician suggested referring her to a lung specialist several times, in the last two years before her death he did not insist on further specialist medical tests and, in the committee’s opinion, was too quick to accept the patient’s refusal of further tests.

When it became apparent that patient was not responding to the medication she had been prescribed for years, it would have made sense for the physician to verify whether the patient’s shortness of breath could be treated by other means, so that she would no longer experience her suffering as unbearable. However, the physician only sent the patient for an ECG to see if there were any problems with her heart. The results of the ECG did not explain her shortness of breath either.

Taking all the information provided into account, the committee found that the physician did not explore the cause of the patient’s shortness of breath sufficiently, was not critical enough with regard to the results of tests carried out within the chronic care programme and had too easily concluded that her suffering was without prospect of improvement. It would have been appropriate for the physician to place more emphasis on the importance of further tests to ascertain the cause of her suffering.

The committee found that the physician had not acted in accordance with the statutory due care criterion laid down in section 2 (1) (b) of the Act.