2021; Volume 22, No 3, March
What Is Patient Autonomy and Why Is It Important?
By Lukas Radbruch
IAHPC Chair of the Board
I have been helping out the local mobil vaccination team as a volunteer in the last weeks, visiting nursing homes and vaccinating residents and nursing staff. Everyone is grateful to be vaccinated, but I have also heard stories about loneliness and deprivation. Older people tell me that they look forward to eating in the cantina again, and not alone in their rooms. The elderly have become very lonely during the pandemic.
I am grateful to live in a resource-rich country with a well-functioning health care system and a high degree of social security. Even though there is a lot of bickering in Germany about the vaccine rollout not being fast enough, and priority lists not being followed properly, compared to the situation in most resource-poor countries in Africa, Asia, or Latin America we are fortunate indeed.
There are other problems, though, that seem to be specific to high-resource settings: for example, the discussion around assisted suicide. When we prepared the IAHPC statement on assisted suicide or euthanasia,1 we talked to many colleagues in lower- and middle-income countries, who agreed that it is much less of a discussion in resource-poor settings than in North America, Europe, and Australia.
Germany has ruled that people
can use third-party help to die
In Germany, the Constitutional Court ruled in February 2020 that there is not only a constitutional right to suicide, but that people also have the right to seek and, if offered, use assistance from third parties to this end. Nobody can be obliged to assist with suicide, but individuals or organizations offering such help must not be obstructed. With this ruling, a penal law prohibiting suicide assistance, even if intended as a recurring (or business-like, or professional) pursuit, was invalidated.2 The court did not restrict the right for suicide (or assisted suicide) to serious or incurable diseases, but for all stages of a person’s existence.
The court ruling emphasizes the focus on autonomy in Western societies. People are masters of their own fate, and this includes the option to end your life if you want to. The ruling of the constitutional court certainly aligns with the majority opinion of the German population. It also indicates a fundamental shift from suicide prevention to enabling access to assisted suicide. A few palliative care specialists, including myself, have started a discussion with specialists from the National Suicide Prevention Program, and I am learning a lot from those discussions. We agreed that good palliative care may be considered suicide prevention, if it offers patients a way to live without suffering and in dignity.
Policy put to a real-life test
Generalized ethical discussions are one thing; individual patients are different altogether. Let me tell you about two patients I met recently.
In the first case, our hospital ethics comittee was called for a consultation about a patient on the intensive care ward. After researching suicide online, he tried to die by overdose—but didn’t have enough medication for it to work. His partner waited three days before she went to his flat, as they had agreed, and found him alive, but unconscious. She called the ambulance that brought him to hospital. Now, however, she wanted all medical interventions to stop, so that he could complete his suicide. She was positive that he would try again soon, and was very afraid that she would not be able to handle it. We told her that many who survive a suicide attempt are open to psychotherapeutic interventions, and that he should be given this opportunity. She remained adamant. However, from a legal as well as an ethical point of view, we had no alternative but to continue treatment. His partner finally had to accept that.
A few days later, I learned that one of our patients, with advanced cancer, had applied all fentanyl patches that had been prescribed at once, took all her breakthrough pain medication, and topped them up with sleeping pills. She left a suicide note for the family. Her husband found her in the morning, and called our team. The family confirmed that she had stated repeatedly that she did not want to continue living, that she had stopped all cancer treatment, and prepared for the end of life. She had even selected her burial place. Her respiratory rate was very low and, after some discussion, we decided to let her die as she had planned, without removing the patches or even antagonizing the opioid overdose. She died two hours later; the family was pleased that she had been allowed to end her life, as she had wished.
Where are the limits of autonomy?
The concept may be tied to culture
The only major difference between the two patients: one had no life-limiting disease, the other had advanced and metastatic cancer. The first patient was slowly recovering in intensive care, the second was further along in the dying trajectory. But does this justify accepting patient autonomy in the second case, but not the first?
Autonomy seems to be the predominant ethical principle in these kinds of discussions in Germany, as in many Western societies. From my colleagues in Africa, I have learned about Ubuntu, which focusses on collective responsibility in the community and places much less emphasis on individual autonomy. Similar philosophies with less focus on autonomy and more on family or community are known in other non-Western societies. Sometimes I wish that we could introduce these concepts in our discussions on assisted suicide or euthanasia!
References
1. De Lima L, Woodruff R, Pettus K, Downing J, Buitrago R, Munyoro E, Venkateswaran C, Bhatnagar S, Radbruch L. International Association for Hospice and Palliative Care Position Statement: Euthanasia and physician-assisted suicide. J Palliat Med 2017; 20(1): 8-14.
2. Radbruch L, Jaspers B (2021). Is This the Society in Which We Want to Live? J Palliat Med 24(2): 160-161.
3. Dyer O. WHO Retracts Opioid Guidelines after Accepting That Industry Had An Influence. BMJ 2020; 368: m105.
4. Pettus K, De Lima L, Maurer M, Husain A, Connor S, Torode J, Ling J, Downing J, Rajagopal MR, Radbruch L, Pastrana T, Luyirika EB, Goh C, Marston J, Cleary J. Ensuring and Restoring Balance on Access to Controlled Substances for Medical and Scientific Purposes: Joint statement from palliative care organizations. J Pain Palliat Care Pharmacother 2018; (2-3): 124-128.
5. World Health Organization. Ensuring Balance in National Policies on Controlled Substances—Guidance for availability and accessibility of controlled medicines. Geneva: WHO Press, 2011.
6. Radbruch L, Jünger S, Payne S, Scholten W. Access to Opioid Medication in Europe (ATOME): Final report and recommendations to the Ministries of Health. 2014.
7. Junger S, Brearley S, Payne S, Mantel-Teeuwisse AK, Lynch T, Scholten W, Radbruch L. Consensus Building on Access to Controlled Medicines: A four-stage Delphi consensus procedure. J Pain Symptom Manage 2013; 46(6): 897-910.
8. Scholl L, Seth P, Kariisa M, Wilson N, Baldwin G. Drug and Opioid-Involved Overdose Deaths—United States, 2013-2017. MMWR Morb Mortal Wkly Rep 2018; 67(5152): 1419-1427.
9. Heyman GM, McVicar n, Brownell H. Evidence that social-economic factors play an important role in drug overdose deaths. Int J Drug Policy 2019; 74: 274-284.