This study assessed sedation in terminal cancer patients in terms of three characteristics: frequency; relationship to intractable symptoms; and the extent to which medical staff, family, and patients found sedation to be ethically acceptable and efficacious. Two hundred seventy-six consecutive patients, who were admitted to the palliative care unit of National Taiwan University Hospital in Taiwan between August 1998 and the end of May 1999, were enrolled. A recording form was completed every day. This included demographic data, pain and common symptom scores, and the use of sedation in the terminal phase. Seventy (27.9%) of 251 patients who died received sedation. Sedation was administered to relieve agitated delirium in 40 (57.1%), dyspnea in 16 (22.8%), severe pain in 7 (10%) and insomnia in 5 (7.2%). The drugs used for sedation were haloperidol in 35 (50%), midazolam in 17 (24.3%), and rapidly increasing dosage of morphine in 9 (12.9%). In fewer than half (42.9%) of the patients, sedation was with the consent of both patient and family, and half (50%) had the consent of family alone. The overwhelming majority of medical staff and family felt the decision to use terminal sedation was ethically acceptable. There was no significant difference in survival time between sedated and non-sedated patients (28.49 vs. 24.71 days, t = -0.791, P = 0.430). Positive ethical acceptability and higher satisfaction with symptom control with terminal sedation were found in both medical staff and family in this study. Further work is needed to find the most appropriate time of intervention and to improve management of refractory symptoms in dying patients.
Ageing has been recognized as one of the most critically important health-care issues worldwide. It is relevant to Asia, where the increasing number of older populations has drawn attention to the paramount need for health-care investment, particularly in end-of-life care. The advocacy of advance care planning is a mean to honor patient autonomy. Since most East Asian countries are influenced by Confucianism and the concept of ‘filial piety,’ patient autonomy is consequently subordinate to family values and physician authority. The dominance from family members and physicians during a patient’s end-of-life decision-making is recognized as a cultural feature in Asia. Physicians often disclose the patient’s poor prognosis and corresponding treatment options to the male, family member rather to the patient him/herself. In order to address this ethical and practical dilemma, the concept of ‘relational autonomy’ and the collectivism paradigm might be ideally used to assist Asian people, especially older adults, to share their preferences on future care and decision-making on certain clinical situations with their families and important others. In this review article, we invited experts in end-of-life care from Hong Kong, Indonesia, Japan, South Korea, Singapore and Taiwan to briefly report the current status of advance care planning in each country from policy, legal and clinical perspectives. According to the Asian experiences, we have seen different models of advance care planning implementation. The Asian Delphi Taskforce for advance care planning is currently undertaken by six Asian countries and a more detailed, culturally sensitive whitepaper will be published in the near future.
Background In the palliative care setting, infection control measures implemented due to COVID-19 have become barriers to end-of-life care discussions (eg, discharge planning and withdrawal of life-sustaining treatments) between patients, their families, and multidisciplinary medical teams. Strict restrictions in terms of visiting hours and the number of visitors have made it difficult to arrange in-person family conferences. Phone-based telehealth consultations may be a solution, but the lack of nonverbal cues may diminish the clinician-patient relationship. In this context, video-based, smartphone-enabled family conferences have become important. Objective We aimed to establish a smartphone-enabled telehealth model for palliative care family conferences. Our model integrates principles from the concept of shared decision making (SDM) and the value, acknowledge, listen, understand, and elicit (VALUE) approach. Methods Family conferences comprised three phases designed according to telehealth implementation guidelines—the previsit, during-visit, and postvisit phases. We incorporated the following SDM elements into the model: “team talk,” “option talk,” and “decision talk.” The model has been implemented at a national cancer treatment center in Taiwan since February 2020. Results From February to April 2020, 14 telehealth family conferences in the palliative care unit were analyzed. The patients’ mean age was 73 (SD 10.1) years; 6 out of 14 patients (43%) were female and 12 (86%) were married. The primary caregiver joining the conference virtually comprised mostly of spouses and children (n=10, 71%). The majority of participants were terminally ill patients with cancer (n=13, 93%), with the exception of 1 patient with stroke. Consensus on care goals related to discharge planning and withdrawal of life-sustaining treatments was reached in 93% (n=13) of cases during the family conferences. In total, 5 families rated the family conferences as good or very good (36%), whereas 9 were neutral (64%). Conclusions Smartphone-enabled telehealth for palliative care family conferences with SDM and VALUE integration demonstrated high satisfaction for families. In most cases, it was effective in reaching consensus on care decisions. The model may be applied to other countries to promote quality in end-of-life care in the midst of the COVID-19 pandemic.
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