Edited by: Francesco Pagnini, Catholic University of Milan, Italy
Reviewed by: Gian Mauro Manzoni, Istituto Auxologico Italiano IRCCS, Italy; Francesco Pagnini, Catholic University of Milan, Italy
*Correspondence: Ralf Stutzki, Clinical Ethics Support and Accompanying Research, Universitäre Psychiatrische Kliniken, Schanzenstrasse 13, 4056 Basel, Switzerland. e-mail:
This article was submitted to Frontiers in Psychology for Clinical Settings, a specialty of Frontiers in Psychology.
This is an open-access article distributed under the terms of the
During the course of the disease, Amyotrophic Lateral Sclerosis (ALS) patients may suffer from depression, hopelessness, the feeling of loneliness, and loss of control (Rabkin et al.,
In Switzerland, however, assistance in committing suicide by a physician or a lay person is not explicitly regulated by law, but article 115 of the Swiss Penal Code allows assistance in suicide provided that the person seeking assistance has decisional capacity and the person assisting – physician or lay person – is not motivated by reasons of self-interest. Based on this article, Swiss “right to die” organizations offer assistance to commit suicide (Fischer et al.,
The objective of this study is to analyze patients’ and caregivers’ attitudes toward AS, life-prolonging measures as well as associated factors (e.g., depression, quality of life (QoL), loneliness, suffering, education, profession, family status, living situation, Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS, and time after diagnosis) in a country with a comparatively easy access to AS.
Swiss patients and their primary caregivers were recruited from a tertiary referral center (Muskelzentrum/ALS clinic) at the Kantonsspital St. Gallen. Patients and caregivers attended the ALS outpatient clinic on a regular basis (usually every 3 months). Patients and caregivers had to be at least 18 years old. Further inclusion criteria for patients were a diagnosis of definitive, probable, or probable laboratory supported ALS according to the revised El Escorial Criteria (Brooks et al.,
For this study inclusion criteria, exclusion criteria, variables, and statistical analysis were pre-specified. Data were retrieved through questionnaires and personal interviews during home visits. The data collection took place as soon as patients had been informed about life-prolonging measures. Interviews were carried out by a researcher trained in interview technique, experienced in pastoral care, and medical ethics, not involved in clinical care of the patients and their primary caregivers. Patients and caregivers filled in the questionnaires simultaneously. In case the patient was unable to complete the questionnaire by his/her own hand due to weakness, the interviewer completed the questionnaire according to the patient’s statements. The mean duration of the interview was approximately 60 min. After the interview, the primary caregiver/relative had the opportunity to clarify any issues that may have arisen during completion of the questionnaire. Specifically the following data and questionnaires were retrieved/applied:
The collection of data included age, sex, living situation, education, profession, and religious confession.
(Eleven-point format; 0–10) asking the following questions: (1) What is your current QoL?; (2) How much are you suffering from your disease/from the disease of your partner?; (3) How lonely do you feel?; (4) How strong is your current desire to ask others for help to end your life prematurely?; (5) How distressing or how helpful was it for you to speak about such issues?
A self-assessment scale to quantify patients’ anxiety and depression by choosing one response from four given. The range is from 0 to 42 with the maximum score indicating a high level of depression and anxiety (Bjelland et al.,
Patients’ and caregivers’ opinions were assessed with regards to tracheotomy, NIV, and PEG within a four-point response format. The following questions were asked: What is your attitude toward the following life-prolonging measures: (a) Tracheotomy; (b) NIV; (c) PEG? Possible answers to each item were: (a) I am not sure; (b) I am absolutely in favor of it; (c) I am in favor of it under certain circumstances; (d) I am against it.
Questions in yes/no format included: (1) Have you ever thought about committing suicide after receiving your diagnosis?; (2) Can you imagine a future scenario in which a physician prescribes a fatal drug which you administer yourself?; (3) Can you imagine a future scenario in which a physician prescribes and administers to you a fatal drug?; (4) Have you ever discussed suicide with others?; (5) Would you like to discuss suicide with a physician?
The IRR assesses both public and private religiosity: (1) summing up attendance at religious meetings and services and the number of church members known to the patient; (2) self-assessment of personal religiosity as well as the amount of strength and comfort provided by personal faith (Robbins et al.,
For continuous variables (e.g., age) the mean of the differences between “patient” and “caregiver” was calculated by the
In order to predict score ratios between patients and caregiver, generalized linear mixed-effects models with group (“patient” and “caregiver”) and given variables as fixed factors (sex, age, education, profession, family status, living situation, children, ALSFRS, time after diagnosis, and QoL) and subject (“patient”) as random factor were performed either as multivariate or univariate model (for each parameter as a separate model). In order to predict dichotomous variables (yes versus no) concerning suicidal ideation for patients, logistic regression models were performed providing odds ratios (OR) and 95% confidence intervals (CI) with corresponding
All analyses were performed using R version 2.12.2 (R Development Core Team,
During the recruitment period from 2008 to 2010 a total of 59 patients and caregivers were asked whether they would participate in this study. Twenty-six patients declined, 33 patients and their caregivers agreed to participate. The most frequent reason for declining participation was “no interest” and reluctance toward the themes of religiosity and spirituality. Table
Patients % ( |
Caregivers % ( |
|
---|---|---|
Age (mean, range) | 59.6 (38–79) | 56.9 (31–79) |
Sex | ||
Female | 36.4 (12) | 62.5 (20) |
Male | 63.6 (21) | 37.5 (12) |
Living situation | ||
Alone | 9.1 (3) | 3.1 (1) |
With spouse | 57.6 (19) | 59.4 (19) |
With spouse and child(ren) | 33.3 (11) | 37.5 (12) |
Religious confession | ||
Roman-catholic | 51.5 (17) | 46.9 (15) |
Protestant | 33.3 (11) | 25.0 (8) |
No confession | 15.2 (5) | 28.1 (9) |
Thirteen patients (39%) answered that during the course of the disease they had thought about the possibility of committing suicide (Table
Yes % ( |
No % ( |
No answer % ( |
Associated factors (adjusted for gender and age) | |
---|---|---|---|---|
Thought about suicide after receiving diagnosis | 39.4 (13) | 60.6 (20) | 0 | n.s. |
Can imagine future scenario: committing suicide by means of a prescribed drug | 54.5 (18) | 45.5 (15) | 0 | Quality of life ( |
Can imagine future scenario: suicide with the help of physician administering fatal drug | 57.6 (19) | 42.4 (14) | 0 | n.s. |
Have already discussed suicide with others | 33.3 (11) | 66.7 (22) | 0 | n.s. |
Would like to discuss suicide with a physician | 33.3 (11) | 60.6 (20) | 6.1 (2) | Number of children ( |
The majority of patients (57.6%) and caregivers (50.0%) were against tracheotomy (Table
Not sure% ( |
Absolutely yes % ( |
Yes under certain circumstances % ( |
Against % ( |
||
---|---|---|---|---|---|
Tracheotomy | 0.37 | ||||
Patients | 15.2 (5) | 0 | 27.3 (9) | 57.6 (19) | |
Caregivers | 25.0 (8) | 0 | 25 (8) | 50.0 (16) | |
NIV | 0.17 | ||||
Patients | 3.0 (1) | 42.4 (14) | 33.3 (11) | 21.2 (7) | |
Caregivers | 18.8 (6) | 43.8 (14) | 34.4 (11) | 3.1 (1) | |
PEG | 0.75 | ||||
Patients | 12.1 (4) | 24.2 (8) | 36.4 (12) | 27.3 (9) | |
Caregivers | 25.0 (8) | 18.8 (6) | 53.1 (17) | 3.1 (1) |
The median of QoL rated on a 11-point scale was six for patients and caregivers (
Parameters | Patients (median, IQR) | Caregivers (median, IQR) | Difference of medians | Lower 95% CI | Upper % 95 CI | |
---|---|---|---|---|---|---|
Quality of life | 6 (5–8) | 6 (5–7) | 0.25 | −1.0 | 1.5 | 0.68 |
Loneliness | 0 (0–1) | 2 (0–6) | −3.25 | −5.5 | −1.5 | 0.003 |
Emotional distress | 0 (0–1) | 3 (0.8–5) | −4.25 | −5.5 | −3.0 | <0.001 |
Suffering | 5 (3–6) | 6.5 (5–8) | −2.25 | −3.5 | −0.5 | 0.006 |
With regard to publicly practiced or private religiosity patients considered themselves to be more religious than their caregivers (
The most important finding of the study is that at the time of the interview 94% of the patients had no intention to hasten death. This seems notable as the Swiss legal situation is liberal regarding assistance to commit suicide and the society is tolerating the practice of lay organizations offering the assistance through the collaboration of physicians and lay persons (van der Heide et al.,
With respect to preferences for life-prolonging and ameliorative technologies it seems that ALS patients make choices consistent with preferences expressed shortly after diagnosis (Albert et al.,
Patients’ and caregivers’ attitudes regarding life-prolonging measures were largely concordant. Fifty-eight percent of patients and 50% of caregivers were against tracheotomy. However, caregivers (mean: 22.2%) in general were considerably more unsure about NIV, PEG, and tracheotomy than patients (mean: 9.8%). Furthermore significantly more patients than caregivers were strictly against PEG and NIV. This confirms a fundamental need for more information and discussion about life-prolonging measures as has also been shown by other studies (Albert et al.,
Another important finding of this study is that caregivers scored significantly higher in the domains of suffering, loneliness, and distress filling out the questionnaires compared to patients, despite overall QoL being not different between patients and their caregivers. The only associated factor was patients’ depression and anxiety as measured by HADS. Sex, age, education, profession, family status, living situation, children, ALSFRS, time after diagnosis, and QoL were not related. Previous studies also revealed that depression in patients is associated with caregiver burden (Chio et al.,
This study has several limitations. Patients were recruited from a single center and may therefore not be representative for all Swiss ALS patients. At our ALS Clinic patient care is strictly adhering to international guidelines (Miller et al.,
In summary the “liberal” Swiss legal setting does not promote the wish for AS, but the wish to discuss AS is prevalent amongst ALS patients even in moderately advanced stages of the disease. This wish is associated with poorer QoL and degree of depression.
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
We are thankful to patients and caregivers for participating in this study and to Urs Simmen, biostatistician, for designing and conducting the statistical analysis. Funding: This work was supported by a grant from the Swiss Academy of Medical Sciences, Käthe Zingg Schwichtenberg Fonds in Basel.
This study was approved by the ethics committee of St. Gallen.