American medicine is in the midst of a professional evolution driven by a refocusing of medicine's regard for the patient's viewpoint. Historically, medicine has been largely physician centered, but physicians have begun to incorporate patients' perspectives in ways that increasingly matter. Some call this shift "patient-centered" care. In support of the view that this refocusing reflects a broad professional shift, we describe the evolution to patient-centered care in many areas of medicine: patient care, health-related law, medical education, research, and quality assessment.

Patient-Centered Medicine: A Professional Evolution

Models of doctor-patient relations vary between "paternalistic" and "informative." The paternalistic model emphasizes doctors' authority; alternative models allow patients to exercise their rights to autonomy. Published surveys indicate that most patients want to be informed about their diseases, that a proportion of patients want to participate in planning management of their illnesses, and that some patients would rather be completely passive and would avoid any information. The severity of the patients' conditions, and their being older, less well educated, and male are predictors of a preference for the passive role in the doctor-patient relationship, but demographic and situational characteristics explain only 20% or less of the variability in preferences. The only way a physician can gain insight into an individual patient's desire to participate in decision making is through direct enquiry. The ability to communicate health-related information and to determine the patients' desire to participate in medical decisions should be viewed as a basic clinical skill.

Patients' Preferences for Participation in Clinical Decision Making: A Review of Published Surveys

OBJECTIVE: To describe family perceptions of care at the end of life.



METHODS: In a representative sample of older people who died from chronic diseases, family members were interviewed about satisfaction with treatment intensity, decision-making, and symptom relief in the last month of life, and gave suggestions to improve care.



RESULTS: Interviews were completed with 461 family members, 80% of those contacted. They reported that 9% of decedents received CPR, 11% ventilator support, and 24% intensive care during their last month of life. Family members could not recall a discussion of treatment decisions in 23% of cases. Presence or absence of a living will did not affect the likelihood of no discussion (22% vs 24%, P = .85).



Family informants desired more treatment to sustain life in 8% of deaths. They or the decedent wanted treatments doctors did not recommend in 6% of deaths but refused recommended therapies in 18% of deaths. They believed more care to relieve pain or other symptoms was indicated in 18% of deaths. Asked to make positive or negative comments about any aspect of terminal care, 91% of comments on hospice were positive. Nursing home care received the smallest proportion of positive comments (51%). Family members recommendations to improve end of life care emphasized better communication (44%), greater access to physicians' time (17%), and better pain management (10%).



CONCLUSION: Bereaved family members are generally satisfied with life-sustaining treatment decisions. Their primary concerns are failures in communication and pain control. Discussions that focus on specific treatment decisions may not satisfy the real needs of dying patients and their families. J Am Geriatr Soc 45:1339–1344, 1997.

What is wrong with end-of-life care? Opinions of bereaved family members.

Background The major health care organizations in a geographically defined area implemented an extensive, collaborative advance directive education program approximately 2 years prior to this study. Objectives To determine for a geographically defined population the prevalence and type of end-of-life planning and the relationship between end-of-life plans and decisions in all local health care organizations, including hospitals, medical clinics, long-term care facilities, home health agencies, hospices, and the county health department. Methods For more than 11 months, end-of-life planning and decisions were retrospectively studied for all adult decedents residing in areas within 5 ZIP codes. These decedents were mentally capable in the 10 years prior to death and died while under the care of the participating health care organizations. Data were collected from medical records and death certificates. Treating physicians and decedent proxies were also contacted for interviews. Results A total of 540 decedents were included in this study. The prevalence of written advance directives was 85%. Almost all these documents (95%) were in the decedent's medical record. The median time between advance directive documentation and death was 1.2 years. Almost all advance directive documents requested that treatment be forgone as death neared. Treatment was forgone in 98% of the deaths. Treatment preferences expressed in advance directives seemed to be consistently followed while making end-of-life decisions. Conclusions This study provides a more complete picture of death, end-of-life planning, and decision making in a geographic area where an extensive advance directive education program exists. It indicates that advance planning can be prevalent and can effectively guide end-of-life decisions.

https://jamanetwork.com/journals/jamainternalmedicine/articlepdf/191392/ioi70161.pdf

Death and End-of-Life Planning in One Midwestern Community

Objective. This article reviews the literature on patient–provider interactions among patients with chronic pain conditions with an emphasis on shared medical decision making.

Results.  Key findings suggest that: 1) patients with chronic pain and health care providers are likely to have opposing attitudes and goals, with patients seeking “to be understood as individuals” and struggling to have their pain concerns legitimized while their health care providers may place a greater focus on diagnosis and treatment than quality of life concerns; and 2) female patients may face additional challenges when communicating their pain concerns with providers. Increased emphasis on communication training and efforts to promote a shared decision making process are proposed as possible mechanisms to improve patient–provider interactions.

Conclusions.  Treatment of chronic pain is often complex and may be further complicated when patients and health care providers have differing goals and attitudes concerning treatment. Difficulties in engaging in collaborative treatment decision making may result. Efforts to enhance patient–provider communication as well as to systematically examine nonspecific treatment factors are likely to promote effective management of chronic pain.

Patient-provider interactions in the management of chronic pain: current findings within the context of shared medical decision making.

DESPITE widespread acknowledgment of the need for individuals to draft living wills, durable powers of attorney, or other advance directives, few Americans have done so. To encourage patients to complete advance directives, Congress enacted the Patient Self-Determination Act (hereafter "the Act") last October. The Act takes effect on December 1,1991, and requires hospitals, nursing homes, and hospices to advise patients on admission of their right to accept or refuse medical care and to execute an advance directive. Managed care organizations and home health care agencies must provide the same information to each of their members on members' enrollment. Provider organizations will also be required to (1) document whether patients have advance directives, (2) implement advance directive policies, and (3) educate their staffs and communities about advance directives. Compliance with the Act is a condition for Medicare and Medicaid reimbursement and is tied to institutional

https://jamanetwork.com/journals/jama/articlepdf/386544/jama_266_3_032.pdf

Advance Directives on Admission Clinical Implications and Analysis of the Patient Self-Determination Act of 1990

Robert J. Moss is co-director, Section of Geriatric Medicine, and Clinical Ethics Scholar-in-Residence, Lutheran General Hospital. John La Pluma is director, Center for Clinical Ethics, Lutheran General Hospital, Park Ridge, Ill. As mechanical restraints have never been proven effective in clinical practice, they should not be used routinely. They should be considered a nonvalidated therapy requiring consent. Mechanical restraints are leather or cloth devices, bedrails, or geri-chairs, used to modify the behavior of an individual through the limitation of physical movement. They may be applied as many as 500,000 times a day in the United States in acute and long-term care settings, particularly in providing care for persons over the age of sixty.[1] When restraints are used to protect a patient from harm, their use is for therapeutic purposes. There is considerable uncertainty, however, about whether restraints are safe or effective and whether their benefits outweigh their risks in clinical care. Thus, as Rubenstein and colleagues have noted, the use of mechanical restraints appears to have emerged as a "standard of care by consensus rather than by scientific data."[2] Given that available empirical data suggest that restraints can be inefficacious and dangerous, we contend that mechanical restraints should be considered an investigational or nonvalidated therapy. At the very least, this requires that patients or their reliable proxies give formal informed consent to use of restraints, following full disclosure of their likely risks and benefits. In this context, we Will briefly review current empirical data on restraint utilization and efficacy, and identify the ethical considerations posed for health care professionals when they consider using mechanical restraints in the care of elderly patients. Epidemiology: The incidence of mechanical restraints in the United States varies by setting: 7.4 percent to 22 percent of acute care patients, 3.6 to 5 percent of psychiatric patients, 33 percent of patients in rehabilitation settings, and from 25 percent to 41 percent of patients in long-term care settings may be restrained.[3] In the acute hospital setting, wrist and jacket or chest restraints are most commonly used, particularly on medical and surgical floors. In the hospital, moreover, often more than one restraint is applied simultaneously; up to 20 percent of patients may concurrently be taking major tranquilizers.[4] In extended care settings, lap belts are common, and 40 percent of physically restrained residents also receive psychotropic medications.[5] Depending on the setting, restraints may be used for different reasons. In the acute setting, the most commonly noted indication is perceived danger to self or others."[6] In one prospective study, nurses restrained patients to allow treatments to be implemented (34%), to prevent patients from wandering (23%), and from falling out of bed (11%), to control violent behavior (11%), to promote sitting balance (11%), and to protect themselves (11%).[7] On the rehabilitation unit, restraints are used to keep the patient in a bed or chair (presumably to prevent them from falling). On the psychiatric ward, the management of violent or "out of control" behavior is the most frequent reason for restraints; it may also be one of the more common reasons for their application in the nursing home. According to the National Nursing Home Survey, restraints are used in managing 33.4 percent of agitated residents, 36 percent of aggressive residents, and 34 percent of residents who wander or pace.[8] However, the motivation for restraining patients in both the acute and long-term care settings may not always be patient safety. Restraints are frequently applied to protect an institution from liability subsequent to a patient's fall.[9] Such institutions may breach the standard of care if physicians have failed to order restraint use and bedrail elevation, or have allowed a patient to ambulate prematurely. …

https://www.jstor.org/stable/info/3563342

Robert J. Moss

Papers

Advance Directives on Admission Clinical Implications and Analysis of the Patient Self-Determination Act of 1990

The Ethics of Mechanical Restraints

Pressure sores: more than meets the eye.