Palliative Care instead of assisted suicide and euthanasia? About questionable needs of life-shortening behaviour

[:en]Thomas Sitte, German Palliative Care Donation, Fulda, Germany

Adress for correspondence: e-mail: thomas.sitte@palliativstiftung.de

Abstract

Euthanasia and assisted suicide are discussed more and more in palliative care because of fear for suffering. This raises questions about the palliative care options. Is palliative care sufficient for patients for pain relief or symptom control in the final phase of life? Palliative sedation can be used as a method of choice indicated if other measures of symptom control do not work or are not desired. Is assisted suicide also used in palliative care?

We asked medical specialists in 49 specialized outpatient palliative care teams (PCT) in Germany about their opinions and practice concerning euthanasia and assisted suicide.

The response of the specialists was high (86%). Of all patients, who were cared for by these teams and died in 2013-2014, 8% of the patients and/or their relatives (i.e. 1.452 times) had expressed the wish for life-shortening actions in form of assisted suicide or euthanasia, mostly at the beginning of palliative care. No euthanasia was applied. 17 patients committed suicide. In none of these cases the reason had been physical suffering, which could not been alleviated.

We conclude that – accordingly to the reports of the medical specialists – assisted suicide and euthanasia are not necessary in palliative care patients with physical suffering because alternative options for alleviation of suffering are present. The study indicates that effective suicide prevention at the end of life is possible when palliative care is provided by specialized outpatient palliative care teams.

Introduction

The question of a so-called “good” death (ars moriendi) has a long, cultural tradition. In history, the deliberate shortening of life, brought about by physicians, has usually been viewed with criticism (1,2,3,4). Against the background of increasing options of medical treatment, the way how to deal with dying and death have also changed among the medical profession. There are often confusing ideas that may harm sound decision-making, especially when it is a question of whether dying is permitted, is involuntarily accelerated, or perhaps deliberately brought about. This confusion brings uncertainty among lay people as well as among care professionals whether patients at the end of life would not have to suffer unbearably and/or their suffering (and their life) should be deliberately terminated by a doctor. This study, which started after an intensive, fruitful on-line discussion on the various standpoints with the president of Dignitas in Switzerland (5), describes the current practice on end-of life care in Germany. An important motivation for the study is to create a valid data on whether, to reduce the burden of suffering, commercial assisted suicide was used or whether it might not be necessary to prohibit such commercial assisted suicide by individual doctors and non-doctors or even associations such as Dignitas and Euthanasia Germany.

Commercial assistance suicide has been banned in Germany in December 2015.

However, the German Criminal Law allows both non-doctors and doctors to practise assisted suicide. This is more liberal than in the neighbouring countries (such as Austria, Belgium, Luxembourg, Netherlands, and Switzerland). There are clear prohibitions, and some exceptions are defined (analogous to § 218 of the Criminal Code in Germany, which outlaws abortion and then defines rules for impunity).

The discussion around active euthanasia and physician-assisted suicide has grown louder in Germany too in recent years, with more and more patients asking for the “relieving injection” (6).  Data on the development of suicides and assisted suicides in countries with regulations on assisted suicide or euthanasia (Belgium, Luxembourg, Netherlands, Oregon USA) show steady annual increases in assisted suicides by up to 30% and also an increase in the total of non-assisted and assisted suicides. In Switzerland suicides and so-called accompanied suicides are recorded separately and showed a steady increase from 20% to over 30% between 2010 and 2015, while the figures for so-called unaccompanied suicides, also so-called violent suicides, remained stably high and did not go down! Overall, suicides therefore have gone up considerably in Switzerland.

In the hospice and palliative care survey of 2005-2006 a desire for an early death was documented in about one-eighth of the patients in palliative wards and in around a quarter of the patients registered in hospices (7), and this is also shown in other studies. It was unclear whether this was a serious, repeatedly expressed wish, and in particular one for measures to shorten life. It should also be noted that this data was not collected at home, but from palliative care patients, who had to be admitted to palliative centres or residential homes because of problems at home. Data on the desire to die, suicide, and, in particular, medically justifiable indications for the desire to shorten life among patients in specialised out-patient palliative care (SAPV)  have so far not been systematically examined. A pilot survey among leading German, outpatient palliative doctors showed no need for active shortening of life in 2014 due to the lack of options for easing suffering. The aim of this study was to extend the former pilot. Our research question is centred around 2 statements:

– Even in the case of severe pain, the palliative care options are sufficient for patients for pain relief or symptom control in the final phase of life.

– Palliative sedation can be used as a method of choice indicated if other measures of symptom control do not work or are not desired.

Material and methodology

The survey started in May 2015 and include all Palliative Care Teams (PCTs) for adults in the federal states of Hesse and Saarland and all German PCTs for children, adolescents and young adults (PCT-KJ). The responsible palliative care specialist in each team was approached and interviewed.

In total 49 persons (24 PCTs for adults in Hesse, 5 PCTs for adults in Saarland, 20 PCTs for children, young people and young adults in Germany) were interviewed. After the answers on palliative care options in case of severe suffering, personal questions were asked regarding all suicides and cases of ambiguity.

Results

Of all 49 palliative care medical specialist in the teams, 42 responded (85.7%). Data were based on the years 2013-2014.

In these 2 years 17.772 patients died in the PCT centres. In total 1452 requested for assisted suicide or euthanasia were registered, i.e. 8% of all patients who died, most request coming from patients. In case of euthanasia requests, about half of the requests were supported by relatives. These request were most frequently expressed in the beginning of the palliative care.

Overall, 8 of the 41 palliative care specialists (19%) indicated that patients had died in the last two years by shortening their lives.

Live was shortened in 17 patients by palliative sedation. No euthanasia was applied.

Discussion

First of all the high response may indicate the interest and importance of the project. Also, the high response rate was achieved through approaching the respondents in steps (first by email, then by telephone).

The number of patients in palliative care, who expressed their desire for their life to be shortened, is lower as reported in other studies (7). Also the assisted suicide rate among palliative patients in the SAPV is noticeably lower in comparison with the rate in the total population (8). The number of assisted suicides in SAPV patients with a lot of symptoms is one-twelfth of the nationwide average from 2013, and in the present patient population less than 0.1% of the SAPV patients.

Personal attitudes of palliative care practitioners may be crucial in terms of the kind of actions taken. We find no assisted suicide in some SAPV’s and a few in others. The oncologist Carlo Bock, chairman of the National Commission on the evaluation and monitoring of the euthanasia law in Luxembourg, stated: “the quality of death is different in the case of active euthanasia from if one has to just waste away for a few more days” (9).  And furthermore, a death inside ten minutes is different from one over many days and weeks. That is why he is convinced of the necessity of medically assisted suicide. “As President of our State Control Commission, I can tell you that this is a good death. There is a huge difference between lying sedated in Pampers or dying with full consciousness and dignity.” (10). Evidently, differences in attitudes towards death and dying play a major role in the discussion in assisted suicide (11, 12).

It has not yet been validly investigated whether commercial offers of assisted suicide facilitate the act (13) or, on the contrary, “prevent attempted suicide” (14). The steady increase in the number of accompanied suicides and the total of accompanied suicides and suicide in Switzerland can at least not confirm prevention of attempted suicide.

Just as now the probability of suicide prevention is assessed, the economist Steffen Fleßa points out that in addition to the present individual case, consequences for society as a whole must always be considered. Here the “last thing one can rely on” is an important resource (15). The individual must be able to rest assured that he will also be assisted when he is helpless without his life being shortened. SAPV care, with its three active factors (16) of effective symptom relief (17), the promise of safety and everyday framing contributes greatly to the decrease of the desire to die.

Judging from the outcomes of this survey, it is clear that physical pains can be treated safely in the opinion of the palliative physicians, but there can be no guarantee that every patient can end his life with palliative care just as he wishes. For all patients with markedly painful physical symptoms, the survey shows that palliative sedation is assessed as an effective tool for symptom control. The general goal of palliative sedation (18) is a loss of consciousness, which only goes as far as symptoms sufficiently controlled, not being perceived as a burden by the patient (19).

The medical ethicist Ralf Jox points out that preventing the expansion of organised structures that assist suicide ignore the expressed needs of the persons affected (20): ‘Studies show consistently that 20 to 30 per cent of people with terminal diseases in the end stage have a stable desire to have their life shortened’ and ‘The desire to shorten one’s life also arises when those affected are in palliative care because the motive is not unbearable pain, but individual values and subjective ideas of dignity.’ These statements were not confirmed in this study.

How structure and process quality of the PCTs, professionalization, specialisation, internal level of organisation and real-life networking influence how people think and act, how palliative care can act as suicide prevention can only be assumed. The physicians surveyed all had the additional title “palliative medicine”, 98% were active in different palliative care teams and 62% were mainly working in SAPV care.

All palliative physicians, who stated that they had experienced a shortening of life among their patients, were explicitly asked for the reasons they had been given. The result is clear:

In none of these patients was an untreatable physical condition the reason for premature death by a shortening of life. If this statement can be made in two consecutive years among such a large proportion of patients in palliative care, and it also confirms the statement from the 2014 survey with fewer questions in an even larger collective of palliative patients in the SAPV, there is a great likelihood that the need for suicide, medical assisted suicide or even killing on request due to (physical) suffering in palliative patients drops towards zero when care is provided by qualified personnel.

References

1. Ariès P. Die Geschichte des Todes. München und Wien: Hanser 1980 (11. Auflage 2005). Dtv. München. 1999.
2. Hufeland CW. Über die Verhältnisse des Arztes. Neues Journal der Practischen Arzneikunde und Wundarzneiwissenschaft:1806.
3. Hippokrates. Der Eid des Hippokrates. Mündliche Überlieferung von ca. 400 v.Chr. [Available at: https://de.wikipedia.org/wiki/Eid_des_Hippokrates]. Letzter Zugriff 07.07.2015 um 21:00.
4. WHO. Genfer Ärztegelöbnis. Genf 2006. Available at: https://de.wikipedia.org/wiki/Genfer_Deklaration_des_Weltärztebundes]. Letzter Zugriff 07.07.2015 um 21:00.
5. Sitte T. Diskussion Elke Baezner mit Thomas Sitte in Vorsorge und Begleitung für das Lebensende. Heidelberg: Springer Verlag.2014.
6. Bausewein C, Roller S, Voltz R, Hrsg. Leitfaden Palliativmedizin – Palliative Care. München: Elsevier. 2007.
7. Jaspers B. Ethische Entscheidungen am Lebensende bei Palliativpatienten in Deutschland – Eine prospektive Untersuchung anhand von Daten aus der Kerndokumentation 2005 und 2006. Inaugural-Dissertation. Aachen. 2011
8. Statista. Anzahl der Sterbefälle durch Suizid in Deutschland nach Art der Methode in den Jahren 2011 bis 2013. [Available at: http://de.statista.com/statistik/daten/studie/585/umfrage/selbstmordmethoden-in-deutschland-2006/ ]. Accessed march 2017.
9. Bock C. Podiumsdiskussion „Letzte Hilfe“ von Right to Die Europe“ vom 30.06.2015 auf [Available at: https://www.youtube.com/watch?v=7jeI5x60Eso&feature=youtu.be]. Letzter Zugriff 11.07.2015 23:00.
10. Humanistischer Verband Deutschland. Pressemitteilung zur Podiumsdiskussion „Letzte Hilfe! Ärzte aus dem In- und Ausland diskutieren über Suizidhilfe“ vom 20.06.2015. [Available at: http://hpd.de/artikel/11883]. Letzter Zugriff 11.07.2015 um 23:15.
11. Graefe D. Statement in der Podiumsdiskussion vom 22.04.2014 in Hamburg-Altona „In Würde leben, in Würde sterben?“
12. Gröhe H, Schneider N, Finger E. Und wenn ich nicht mehr leben will? Sterbehilfe in Deutschland. Aßlar: Adeo-Verlag. 2015.
13. Loenen Gv. Das ist doch kein Leben mehr! Frankfurt: Mabuse Verlag. 2015.
14. Minelli LA. Wie wollen wir sterben? Vortrag in Oldenburg vom 23.01.2015.
15. Fleßa J. Letztverläßlichkeit als Ressource – Der Wert der Palliativmedizin für die Volkswirtschaft. Zf PallMed 2014; 15:78-83.
16. Schneider W, Eschenbruch N, Thoms U, Eichner E, Stadelbacher S. Wirksamkeit und Qualitätssicherung in der SAPV-Praxis – Eine explorative Begleitstudie. Ergebnisbericht. [Available at: http://www.philso.uni-augsburg.de/lehrstuehle/soziologie/sozio3/projekte/02Abschlossene_Projekte/SAPV_Begleitstudie_2010_2011/ ]. Accesed march 2017.
17. Sitte T, Bausewein C. Intranasal fentanyl for episodic breathlessness. Journal of Pain and Symptom Management 2008;36(6).
18. Alt-Epping B, Sitte T, Nauck F, Radbruch L. Sedierung in der Palliativmedizin – eine Leitlinie für den Einsatz sedierender Maßnahmen in der Palliativversorgung. Zf Pallmed 2010; 11: 1–11.
19. Müller-Busch HC. „Im Schlaf sterben“ Sedierung am Lebensende – ein Kriterium für gutes Sterben? Praxis Palliative Care 2014;25:26-28.
20. Jox R. Tagungsbeitrag bei „Assistierter Suizid – Der Stand der Wissenschaft“. Berlin. 2015. http: [Available at: //deutsches-stiftungszentrum.de/aktuelles/2015_06_15_assistierter_suizid/index.html].

Conflicts of interest: none
Received: 21 February 2017
Accepted: 27 March 2017[:ro]Conţinutul este disponibil doar în limba engleză AICI.[:]