Capacity to make health care decisions: its 
importance in clinical practice

Background. Assessment of capacity plays a pivotal role in determining when decisions need to be made on behalf of an individual. It therefore has major clinical management implications for health care professionals and civil liberties implications for the person concerned. In many countries, there is a presumption that adults have the capacity to make health care decisions. However, in persons with a mental disability, capacity may be temporarily or permanently impaired.Methods. A selective review is presented which considers: (i) the broad approaches taken to determining capacity; (ii) the abilities commonly assessed in determining capacity; and (iii) the principles underlying health care decision-making for adults who are without capacity.Results. Capacity is a functional concept, determined by the person's ability to understand, retain, and weigh up information relevant to the decision in order to arrive at a choice, and then to communicate that choice. We have reviewed the studies that examined decision-making abilities in people with dementia, chronic mental illness or intellectual disabilities. Approaches to decision-making in adults who lack capacity include: anticipatory decisions made through advance health care statements or decisions by proxy based on ‘best interests’ or ‘substituted judgement’.Conclusions. The understanding of clinical and legal aspects of capacity is still developing. This paper examines current concepts of capacity and decision-making on behalf of those without capacity. We propose a framework, in line with current ethical and legal guidelines, as an aid to clinicians when they are seeking consent for a health care intervention.

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The Doctor-Proxy Relationship: Perception and Communication

The Journal of Law Medicine & Ethics ◽

10.1111/j.1748-720x.1999.tb01431.x ◽

1999 ◽

Vol 27 (1) ◽

pp. 13-19 ◽

Cited By ~ 8

Author(s):

Jomarie Zeleznik ◽

Linda Farber Post ◽

Michael Mulvihill ◽

Laurie G. Jacobs ◽

William B. Burton ◽

...

Keyword(s):

Health Care ◽

Decision Making ◽

Health Care Professionals ◽

Family Health ◽

Living Will ◽

Health Care Decisions ◽

Medical Interventions ◽

Incapacitated Patients ◽

Make Health Care ◽

Relationship Perception

Health care decision making has changed profoundly during the past several decades. Advances in scientific knowledge, technology, and professional skill enable medical providers to extend and enhance life by increasing the ability to cure disease, manage disability, and palliate suffering. Ironically, the same interventions can prolong painful existence and protract the dying process. Recognizing that medical interventions, especially lifesustaining measures, are not always medically appropriate or even desired by a patient or family, health care professionals endeavor to determine who should make health care decisions and according to what standards. The importance that Western culture places on individual rights and self-determination is reflected in the growing advocacy for patient autonomy and the discrediting of physician paternalism. However, the question of autonomy becomes more complex when patients lack the capacity to decide for themselves.Advance directives represent one response to the dilemma of decision making for incapacitated patients. The original advance directive, the living will, is a written list of instructions reflecting the individual's wishes about care, usually at the end of life.

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Euthanasia: Analysis for the Concept from Islamic Perception

New Trends and Issues Proceedings on Advances Pure and Applied Sciences ◽

10.18844/gjpaas.v0i7.3177 ◽

2016 ◽

pp. 175-182

Author(s):

Ahmad Hussien Rayan

Keyword(s):

Health Care ◽

Decision Making ◽

Health Care Professionals ◽

Legal Aspects ◽

The Other ◽

Active Euthanasia ◽

Physical Pain ◽

Futile Treatment ◽

Analgesic Agents ◽

Analysis Concept

Abstract Euthanasia is ethically, religiously, and legally charged topic. Health care professionals should integrate spiritual aspects in their decision making regarding euthanasia while dealing with muslim patients. The purpose of this paper is to examine the Islami view for the concept of euthanasia and its permissiblility in Islam, while discussing different ethical and legal aspects that may affect the perspectives of muslims regarding euthanasia. Active euthanasia is prohibited in Islam. This view is strongly supported by laws and ethical princiles in Islamic communites. However, administering analgesic agents that might shorten the patient’s life, with the purpose of relieving the physical pain is accepted, because it is not aimed at killing. On the other hand, negative euthanasia is never accepted. However, withdrawing a futile treatment and allowing death to take its natural course for persons who are already died is acceptable. In this situation, the patient is already dead, and there is no use of keeping life supporting instruments. It is highly recommended for all health care professionals who are providing care for muslim patients to carefully consider the Islamic perspective regarding euthanasia. Keywords: Euthanasia, Analysis, Concept, Islam, Perception, Law, Ethic

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The effect of multimodal comprehensive care methodology training on oral health care professionals’ empathy for patients with dementia

BMC Medical Education ◽

10.1186/s12909-021-02760-2 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Masaki Kobayashi ◽

Mio Ito ◽

Yasuyuki Iwasa ◽

Yoshiko Motohashi ◽

Ayako Edahiro ◽

...

Keyword(s):

Health Care ◽

Oral Health ◽

Health Professionals ◽

Health Care Professionals ◽

Dental Treatment ◽

Oral Care ◽

Training Programme ◽

Comprehensive Care ◽

Dental Hygienists ◽

People With Dementia

Abstract Background The prevalence of oral diseases in people with dementia has increased, and patients with dementia have worse oral health than people without dementia. However, in the provision of oral care, these patients often exhibit care-resistant behaviours. Empathy is important for health care professionals who provide dental care for people with dementia. A study was conducted to assess whether a multimodal comprehensive care methodology training programme, Humanitude™, was associated with an improvement in empathy for people with dementia among oral health care professionals. Methods This research was a pre-post prospective study. A total of 45 dentists and dental hygienists participated in a 7-h multimodal comprehensive care methodology training programme. Participants’ empathy for their patients was evaluated with the Jefferson Scale of Physician Empathy-Health Professionals Version (JSPE-HP) before the training and 1 month after the training (primary outcome). Each participant listed 3 patients with poor oral health due to the refusal of usual oral care or dental treatment from his or her clinical practice. The oral health of the 3 care-resistant patients listed by each participant was evaluated by the Oral Health Assessment Tool (OHAT) before the training and 1 month after the training (secondary outcome). Results The post-training response rate was 87% (21 dentists and 18 dental hygienists). From pre-training to post-training, the multimodal comprehensive care methodology training significantly increased the mean empathy score (from 113.97 to 122.95, P < 0.05, effect size = 0.9). Regardless of gender, profession and years of clinical experience, all post-training subgroup scores were higher than the pre-training subgroup scores. The tongue, natural teeth, and oral hygiene scores of patients with dementia who resisted usual oral care or dental treatment, as assessed by the OHAT, were significantly improved compared with those before the training. Conclusions The multimodal comprehensive care methodology training was associated with an improvement in oral health professionals’ empathy for patients with dementia. These findings suggest that randomized controlled trials with large sample sizes will be needed. Trial registration UMIN Clinical Trials Registry (UMIN-CTR), UMIN000041687. Registered 4 September 2020 – Retrospectively registered, https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000047586

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Caring for Gravely Ill Children

PEDIATRICS ◽

10.1542/peds.94.4.433 ◽

1994 ◽

Vol 94 (4) ◽

pp. 433-439 ◽

Cited By ~ 5

Author(s):

Alan R. Fleischman ◽

Kathleen Nolan ◽

Nancy N. Dubler ◽

Michael F. Epstein ◽

Mary Ann Gerben ◽

...

Keyword(s):

Health Care ◽

Decision Making ◽

Health Care Professionals ◽

Treatment Plan ◽

Ethics Committees ◽

Well Being ◽

Pediatric Health Care ◽

Spiritual Well Being ◽

Primary Focus

Background. Much has been written about the care of the hopelessly ill adult, but there is little guidance for pediatric health care professionals in the management of children who are critically or terminally ill. Methods. Through a 3-day meeting in Tarrytown, NY, attended by a group of pediatricians and others directly involved in these issues, a principled approach was developed for the treatment of, and health care decision-making for, children who are gravely ill. Results. The group agreed that the needs and interests of the child must be the central focus of any treatment plan and that the child should be involved to as great extent possible, consistent with developmental maturity, in the decision-making process. Quality of future life should be viewed as being relevant in all decisions. Parents are believed to be the natural guardians of children and ought to have great latitude in making decisions for them. However, parental discretion is not absolute and professionals must maintain an independent obligation to protect the child's interests. Conclusions. Decision-making should be collaborative among patient, parents, and professionals. When conflict arises, consultation and ethics committees may assist in resolution. When cure or restoration of function is no longer possible, or reasonable, promotion of comfort becomes the primary goal of management. Optimal use of pain medication and compassionate concern for the physical, psychological, and spiritual well-being of the child and family should be the primary focus of the professionals caring for the dying child.

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Advanced Care Planning for Children With Special Health Care Needs: A Survey of Parental Attitudes

PEDIATRICS ◽

10.1542/peds.97.5.682 ◽

1996 ◽

Vol 97 (5) ◽

pp. 682-687

Author(s):

Robert H. Wharton ◽

Karen R. Levine ◽

Stephen Buka ◽

Linda Emanuel

Keyword(s):

Health Care ◽

Decision Making ◽

Special Needs ◽

Parental Attitudes ◽

Best Interests ◽

Children With Special Needs ◽

Convenience Sample ◽

Developmental Potential ◽

Medical Needs ◽

Life Decisions

Objectives. This study explored parental attitudes about their interactions with their children's providers when decision making involved critical life situations. We evaluated parents' attitudes regarding the following questions: What was the parents' understanding of their children's health care issues, and what was the parental perception of the professionals' understanding of their children and of themselves? Who should be the principal decision makers for the children? What was the parents' knowledge about advance directives? Did parents want to participate in a process of advance planning to assist with critical life decision making for their children? Methods. We surveyed all parents attending a conference sponsored by the Massachusetts Department of Public Health for parents of children with special needs. The questionnaire was provided to all parents attending the conference. An announcement was made at the conference requesting parental participation. The 76 respondents constitute a convenience sample of parents of children with special needs sufficient for this preliminary stage of investigation. Results. Of 177 parents attending the conference, 76 (43%) completed the questionnaire. Eighty-eight percent of the participants strongly agreed that they understood their children's conditions. Twenty-one percent stated that they had sufficient understanding of their children's future medical needs, and 21% thought that they had a sufficient understanding of their children's developmental potential. Ninety-nine percent of parents strongly agreed that physicians should share information with parents no matter how serious or potentially upsetting. Ninety-four percent of those parents who thought that their children's physicians understood their own needs also thought that the physicians understood their children's needs. In contrast, only half (55%) of those parents who thought the physicians did not understand their needs thought the physicians understood their children's needs. Ninety-two percent of parents who thought that the physicians understood their needs agreed that the physicians would make the best decisions in crises versus 60% of those who did not think the physicians understood their needs. Seventy-four percent stated that they would consider written guidelines for their children that dealt with critical life situations. All parents who thought their children's conditions were not understood wanted written guidelines. Of those parents who had thought their children would not survive (15 parents), 94% wanted written guidelines. All seven parents who had been told their children would not survive wanted written guidelines. Conclusions. Parents in this study were generally satisfied with care being provided to their children. Nevertheless, the results clearly suggest goals that could lead to improved capacity for parents and providers to make critical life decisions for and with children. First, physicians must understand the needs of parents to be able to make decisions that would be in the children's best interests. Second, parents should participate fully in critical life decisions for their children and should use written guidelines to assist with the process of these critical life decisions. Our findings strongly support the development of a longitudinal process, initiated early after the onset or discovery of illness and maintained longitudinally throughout the course of a child's illness, to help parents and providers work together in this vital area of health care to children.

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Understanding the perspectives of older adults and elderly regarding vaccination; a snapshot in four European countries

European Journal of Public Health ◽

10.1093/eurpub/ckz185.209 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

A Timen ◽

R Eilers ◽

S Lockhart ◽

R Gavioli ◽

S Paul ◽

...

Keyword(s):

Older Adults ◽

Health Care ◽

Decision Making ◽

Infectious Diseases ◽

Health Care Professionals ◽

Elderly Care ◽

European Countries ◽

Decision Making Process ◽

Ageing Population ◽

Syncytial Virus

Abstract Prevention of infectious diseases in elderly by immunization is a prerequisite to ensuring healthy ageing. However, in order for the vaccine programs to be effective, these need to be provided by health care professionals who have up-to-date knowledge and high motivation. Furthermore, the knowledge and attitudes towards vaccination in the targeted age groups needs to be fully understood. When focusing on the information provision, it is important to know from whom or which institution older adults and elderly would like to receive and in which form. In January 2019, an international project called the VITAL (The Vaccines and InfecTious diseases in the Ageing population) project was started, within the framework of IMI (Innovative Medicines Initiatives). One of the goals of the VITAL project is to develop strategies to educate and train health care professionals (HCPs) and to promote awareness among stakeholders involved in elderly care management. We briefly focus on the results of studies undertaken in four European countries (Italy, France, The Netherlands and Hungary), which reveal the perspective of older adults and elderly regarding influenza, pneumococcal, herpes zoster vaccination and respiratory syncytial virus (RSV) as well as generic characteristics of the vaccines and diseases. We will show how attitudes towards vaccination are represented in our study population and which determinants influence the decision-making process of accepting vaccination. Furthermore, we shall elaborate on how the decision-making process towards vaccination takes place and which additional information is needed. In the second part of the session, we shall invite the audience to reflect on the findings and identify the factors they consider most important for setting up a training and education programme on vaccination.

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