Amyotrophic Lateral Sclerosis

The full spectrum of ethical issues in the care of patients with ALS: a systematic qualitative review

“…Keeping in mind the high prevalence and socio-economic impact of dementia compared with ALS, we expected such a difference regarding the number of publications. Second, the thematic focus of the publications we retrieved was notable: of the 41 references we included in our spectrum of ethical issues, only 5 publications dealt with a broad range of ethical issues in ALS [2,6,7,17,18] while 13 publications concentrated on end-of-life decision making and palliative care [10,12,14,15,[19][20][21][22][23][24][25][26][27]. Of these 13 publications, some explicitly dealt with end-of-life decision making or palliative care in ALS [15,21,24], while others used ALS only as an example (many times in form of a case report) to highlight general aspects of these issues [10,19,22].…”

“…Making the diagnosis of ALS Send patient to a specialist early [7] Consider consequences of an early diagnosis [32] Consider genetic testing for diagnosis-if considered beneficial for the patient [33] Be aware of possible diagnostic errors [7] Disclosure of diagnosis Establish a trusting relationship between physician and patient [18] Respect the patient's right to determine amount and timing of disclosure [6] Admit the patient's reactions, emotions and concerns after breaking the news and be open to discussion [6] Disclose all information, the patient needs to handle the diagnosis and for advance care planning [21] Tailor amount of information to the patient's receptiveness and constitution [7] Information about the prognosis Consider the specific need for information about the prognosis [10] Avoid hard timelines on prognosis [7] Consider the consequences for the patient of detailed information about the prognosis [25] 2. Medical indication…”

“…Educate the patient comprehensively about genetic testing [34] Respect the patient's wishes regarding genetic testing [7] Help the patient understand the consequences for relatives of genetic testing [7] Consider possible consequences of genetic testing in healthy patients [34] Therapy Respect the patient's wishes regarding therapy [24] Consider physical as well as psychological symptoms for therapy [35] Consider the psychological implications of different treatment options [36] Use conversations with the patient as a part of medical treatment [19] Adjust the therapy to the patient's coping style [36] Offer the patient comprehensive therapy, even if some measures are not covered by clinical guidelines [26] Respect the patient's preferences in the treatment of emergency situations [19] Stay informed about unproven therapies [18] Carefully evaluate possible benefit and harms of unproven therapies/clinical trials [28] Respect the patient's right to comprehensive information [37] Find the right amount of information for the patient [2] Consider involving the family in communication with the patient [36] Support decision making with detailed and unbiased information about different treatment options [22] Ensure that all possible treatment options according to relevant guidelines are discussed with the patient [23] Ensure the patient is aware that therapy can be terminated upon request [7] Be aware of the consequences for the patient of insufficient information [37] Be aware of the influence of timing and extent of patient information on the patient's decisions [12] Appropriate doctor-patient relationship Create a well-balanced doctor-patient relationship [2] Avoid bias due to prejudices or labelling [38] Respect individuality of each patient [35] Control your emotions towards disabled patients [39] Decision-making capacity Be aware of a possible decline of decision-making capacity over the course of the disease [7] Find an appropriate way to evaluate the patient's decision-making capacity [40] Evaluate the patient's decision-making capacity neutrally …”

“…Discontinuation of life-sustaining measures Support contact between patients to explore alternatives to discontinuation of life support [42] Evaluate the patient's situation without bias [42] Be aware of the psychological burden of withdrawing life-supporting measures [2] Do not limit patient autonomy by your own attitude towards discontinuation of life-supporting measures [21] Consider ethical arguments in discussion about the discontinuation of life-sustaining measures [21] Make sure that the decision reflects the patient's values [42] Frankly communicate your own attitude towards the discontinuation of life-sustaining measures [21] Physician-assisted suicide Do not abandon a patient asking for PAS [18] Be open to discussing PAS with the patient [43] Discuss PAS with the patient in the earlier stages of the disease [15] Make sure that all legal alternatives to PAS are offered to the patient [20] Refer the patient to a physician who is willing to provide PAS upon request [20] Consider adequate timing of PAS [25] J Neurol Table 2 continued…”

“…Encourage the patient to activate their social networks [36] Be aware of the influence of the disease and its treatment on the patient's social and professional life [39] Caring for next of kin Be aware of the caring family members' needs [18] Be aware of the caring family members' burden [18] Maintain a supportive attitude in challenging situation [18] Mediate conflicts between the patient and caring relatives [13] Give appropriate support to relatives [36] Financial considerations Ensure that the patient gets necessary technical devices [36] Make sure that the patient's decisions are not unduly influenced by financial implications [12] Be aware of the influence of the allocation of limited resources on treatment [32] Cultural aspects Respect cultural differences in the discussion of end-of-life issues [24] Social implications of genetic testing Thoroughly assess the benefits and harms of genetic testing [34] Consider social implications of genetic testing for the patient [34] Consider the consequences of genetic testing for the patient's family [7] J Neurol…”