Do you feel that health care is over-regulated or under-regulated? Explain, using examples where appropriate

Long-Term Care: Managing Across the Continuum, Fourth Edition John R. Pratt

CHAPTER THIRTEEN: ETHICAL ISSUES IN LONG-TERM CARE

CHAPTER HIGHLIGHTS

Introduction – there are many ethical issues relating to long-term care.

Emotional Impact on Consumers – it is important to understand and recognize the emotional

impact on someone needing long-term care. It is a huge lifestyle change.

Access to Long-Term Care – the first ethical issue addressed deals with access to care.

 It is far from universal or equitable.

 Consumers do not always have a choice of services.

Ethics of Rationing – an ongoing debate

 Should health care services be rationed?

 Should everyone get all services they desire?

 Who pays?

Transfer of Assets: “Spending Down” – The Medicaid requirement that consumers must

spend other resources before qualifying for Medicaid raises ethical issues.

 They do not want to lose all that they have saved over the years.

 Medicaid is intended as a safety net for those who have no other assets.

 Lawyers and estate planners find ways to circumvent the rule.

 Who is right?

Autonomy – Virtually all other ethical issues in long-term care seem to revolve around the

question of how much autonomy a person has in deciding how he or she will live and be treated.

 Autonomy can be defined simply as self-determination.

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Long-Term Care: Managing Across the Continuum, Fourth Edition John R. Pratt

 Long-term care consumers want more choice in their care.

 How to grant autonomy and still maintain clinical safety is an ongoing issue.

Culture Change – a national movement based on person-directed values and practices where

the voices of elders and those working with them are considered and respected.

Autonomy–Beneficence Conflict – autonomy in long-term care may conflict with the more

traditional concept of beneficence: the responsibility of the provider to act in the best

interests of the patient.

Other Autonomy-Related Conflicts

 Meeting the wishes (demands) of the consumer within the resources of the provider.

 Balancing the rights or wishes of one consume with others.

 Conflict between consumer desires and provider values.

Informed Consent

 Means that consumers have the right to have enough information to make intelligent

decisions about the care they receive.

 Is a legal right.

 Requires making sure consumers understand their options.

End of Life Treatment Issues – many long-term care ethical issues involve end-of-life care and

all of the complications that attend it.

 Competency and Decision-Making Capacity – if consumer cannot make own

decisions, someone else must do so for them.

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Long-Term Care: Managing Across the Continuum, Fourth Edition John R. Pratt

 Protecting the Interests of the Consumer – defining competency is a subjective process

at best and all involved need to protect the interests of consumers who cannot protect

themselves.

 Advance Directives – the general term for a variety of documents designed to enable

competent adults to make healthcare decision-making plans in advance of possible future

incapacity, including:

 Living Wills – documents that spell out treatments that one wants or does not

want ic case of future inability to make decisions.

 Durable Power of Attorney – designates someone to make such future decisions

on one’s behalf.

 Patient Self-Determination Act – Requires providers to make consumers aware of their

right to create advance directives and have them honored.

 Ethics Committees – in-house committees that assist in ensuring that life and death

decisions are made properly and in accordance with the wishes of the resident.

Futile Care – having to provide life-extending care regardless of the previously stated wishes

of the resident when there is no hope of recovery or improvement in the patient’s condition.

Autonomy: How Far to Go? – This promises to be an ongoing debate with no easy answers.

Everyday Life Issues – Although end of life issues are of critical importance, everyday life

issues are much more on the minds of long-term care consumers, including:

 Privacy – a critical component of a feeling of self-worth and independence, but not

always easy to provide.

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Long-Term Care: Managing Across the Continuum, Fourth Edition John R. Pratt

 Shared Space – residents in an institutional setting must sacrifice some of their privacy

in sharing space with others.

 Confidentiality – respecting privacy also means respecting confidentiality and all

consumers deserve it to the degree possible in a care situation.

 Food – different people have different tastes and preferences in the type of food they eat,

sometimes based on ethnic or religious background. Complying with all of their wishes in

an institutional setting can be very difficult

 Activities – group and individual activities are important for the physical and mental

health of consumers in institutions, and can reinforce individualism if planned carefully.

Restraints – physical and chemical restraints may be necessary to protect the consumer’s safety

and well-being.

 They must not be used for the convenience of staff or to control difficult residents.

 How and how often they may be used are regulated.

Abuse – Any form of abuse of long-term care residents or clients is unethical and illegal. Abuse

may be:

 Physical – striking or otherwise harming the consumer (e.g., not providing needed

medication or treatment).

 Sexual – taking sexual advantage of a vulnerable resident.

 Emotional – can range from the extremes of yelling and name-calling to subtle

intimidation.

 Fiduciary – failure to demonstrate appropriate stewardship of the finances of consumers.

Management Ethics

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Long-Term Care: Managing Across the Continuum, Fourth Edition John R. Pratt

 Focus on ethical issues concerning the management of the provider facilities and

agencies.

 May not affect consumers as directly, but can have the same long-term impact.

Ethics Management Programs – programs spell out an organization’s values, set guidelines

for behavior, train employees, and provide guidance in difficult situations. They usually

include:

 Codes of Ethics – a description of the organization’s values and the ethical rules by

which it operates.

 Codes of Conduct – the code of ethics by identifying behaviors that are acceptable.

 Policies and Procedures – the code of ethics by identifying behaviors that are

acceptable.

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Chapter 13 Ethical Issues in Long-Term Care

Learning Objectives

1. Understand the social and emotional impact of changes caused in the lives of individuals when long-term care is needed

2. Discuss the ethical aspects of access to care

3. Define autonomy and the relationship between independence and self- determination

Learning Objectives (continued)

4. Identify end-of-life issues and discuss their ethical and legal implications

5. Understand the magnitude of day-to-day needs of consumers and providers’ efforts to meet them

6. Discuss management ethics and its role in a long-term care organization

Emotional Impact on Consumers Chronic illness or disability means:

Can no longer do things that were important, resulting in feeling of loss

Must rely on others for assistance with most intimate activities

Loss of privacy May need to move, be separated

from family Most important – loss of self-worth

Access to Long-Term Care

Access-related issues include: A reimbursement-driven system Cost-cutting efforts Inequitable distribution of services Institutional vs. non-institutional options Balancing obligation to provide care

with obligation to use resources wisely

The Ethics of Rationing

Explicit rationing: • Government allocation of limited funds • Insurance and managed care don’t cover certain

conditions and procedures Implicit rationing:

• Favors one type of provider over another to influence service delivery

– e.g., home health care vs. nursing care facilities

Transfer of Assets

Is transferring assets to qualify for Medicaid ethical?

Right to leave assets to children? Should the wealthy be subsidized? Is it ethical to penalize frugal savers?

Autonomy

The concept of autonomy as the right to self-determination • Impact of cultural change

The autonomy-beneficence conflict Other autonomy-related conflicts Informed consent

End-of-Life Issues

Competency and decision-making capacity

Protecting the interests of the consumer • Advance directives • Patient Self-Determination Act • Ethics committees

Providing “futile care”

Everyday Life Issues

 Privacy  Shared space  Confidentiality  Food  Activities

Restraints

Types of restraints Regulatory requirements for their use The ethics of using restraints

Abuse

Types of abuse in long-term care: • Physical abuse • Sexual abuse • Fiduciary abuse • Emotional abuse

Preventing abuse

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Other Settings

The level of dependence of nursing facility residents makes them more vulnerable, but the same ethical issues apply to other settings.

Management Ethics

 Important for any management setting  Of particular importance where

consumers are so vulnerable

Ethics Management Programs

 Codes of ethics  Codes of conduct  Policies and procedures

Summary

Many ethical issues surround the provision

of long-term care to vulnerable

populations. These issues seldom have

single right answers, but provider and

consumer groups are working toward

resolution.