Personal Medical Decisions: What You Need to Know

Table of Contents

Introduction
Begin by Asking Questions
Should You Become Seriously Ill
Putting Your Decisions in Writing
We Are Here to Help
Glossary of Terms

For more information, please contact the Department of Bioethics (Contact Information).

Introduction

While you are in the hospital, you may be faced with a number of decisions.  Some may be as simple as choosing your meals from the menu.  Others may be more difficult, such as making a decision about an operation.

This brochure has been designed to help you deal with the difficult choices.  At the end of the brochure is a list of words and definitions you may need to know.

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Begin by Asking Questions

Many people become timid in strange and stressful situations, especially when they are sick or frightened.  It is your right and even your duty to yourself to understand as much about your medical care as you can.  This means that you need to ask questions.  Your doctor is the primary source of many answers since you will be making many decisions together.  You should ask your doctor to explain what you do not understand.  Other members of the team caring for you can be a source of help also, including nurses, social workers, therapists, chaplains and members of the Bioethics Department (professionals specializing in dealing with ethical problems associated with medicine and health care).   Because the Cleveland Clinic is a teaching institution, some of the physicians, nurses and other health care providers may be in training, gaining valuable experience beyond their basic academic preparation.  You should speak with your doctor if you have questions or concerns about this.

What kinds of questions should I ask?

Some questions that you may want to ask include:

1)      Why is this procedure or treatment necessary?

2)      Are there any other reasonable alternatives?

3)      What can  I reasonably anticipate the outcome to be?

4)      What are the major risks involved?

5)      What might happen to me if I do not have the treatment?

Why should I ask?

The Cleveland Clinic values the rights of patients to be knowledgeable regarding their decisions related to health care.  The Cleveland Clinic's Patient Rights and Responsibilities statements describe your rights as a patient receiving care as well as your responsibilities as an active participant in your care.  It is expected that patients and providers will refer to and abide by these statements. Copies of these documents are available from your care provider or the Ombudsman Office upon request.           

What does informed consent mean?

Informed consent means that you have been given information about your health care, you understand it, you have thought about it, and you agree to it, whether it be surgery, a procedure or other treatment that is recommended for you. You cannot give meaningful consent unless you are informed and understand the information.(Top)

Should You Become Seriously Ill

What are life support systems?

People think of life support systems as machines that keep you alive, such as a ventilator that breathes for you when you cannot breathe on your own.  In the truest sense, however, a life support can be something as simple as a tube that delivers nourishment to you, or antibiotics to treat an infection.

Life support systems are used every day to help people during an illness and to return them to good health.  Ventilators, for example, are used after surgery to support a patient's breathing until he or she wakes up enough to breathe on his or her own.

Unfortunately, during a serious illness you or your family may need to make a decision about starting or continuing life support systems. There may come a time when the burdens of treatment, such as pain and suffering, may outweigh the potential benefits of continuing such treatment.  In these situations, continuing treatment may simply prolong the process of dying.  When it is clear that there is no chance for recovery or survival despite all that is being done, many people would prefer not to be placed or kept on life support systems.  Choices such as these require time for discussion and for asking questions.  Few people make good decisions when they feel pressured and rushed.  It is helpful to think about these possible situations before they occur and to share your views and feelings with your doctor and your family.

What does resuscitation mean?

Resuscitation is better known as CPR or cardiopulmonary resuscitation. This may include manual chest compression or force applied over the breastbone to stimulate the heart; a tube placed in the windpipe so that oxygen can be sent to the lungs, including the possibility of being connected to a ventilator; electric shock given to the heart and strong drugs administered in an effort to stimulate the heart and to restore blood pressure.

There are situations when this all-out effort may not be the best thing to do.  For example, at the end of a terminal illness, the patient or family members may not want these "heroic measures" performed because the patient has no chance of recovery.  Resuscitation could mean continued, needless suffering.  Your doctor may raise the question of a do-not-resuscitate (DNR) status.  You may want to ask your doctor about this.  When possible, it is important that this decision be discussed with your family and close friends. Further information is available in the brochure "Do Not Resuscitate Orders and Comfort Care" from the Department of Bioethics.(Top)

Putting Your Decisions In Writing

You might wish to put your wishes about life support in writing so that your doctor and family are clear about what you want.  These written directives are known as advance directives.

Ohio law permits two forms of advance directives: living wills and durable powers of attorney for health care.  A living will tells your doctor what decisions you want if you are terminally ill and no longer have decision-making ability.  A durable power of attorney for health care enables you to appoint someone to make decisions for you when you are unable to make informed health care decisions for yourself.  Should you wish to see or sign such a document, blank forms are available in the Admitting, Social Work, Pastoral Care and Ombudsman offices, or ask your health care provider. Your care will not be compromised whether or not you decide to sign an advance directive.  An advance directive that is valid in another state may also be valid in Ohio.

Once my decisions are in writing, can I change my mind?

You may change your mind at any time.  If you change your mind, it is important that you communicate this to your doctor or nurse.  If you have an advance directive, you should modify it as appropriate.

What if a decision is made not to use life support?

Deciding not to have one or more life-sustaining measures does not mean that all other medical and nursing therapies stop. Some patients do not want CPR, but are willing to accept antibiotics or other medications. Regardless of what you decide, patient comfort is primary.  If a decision is made not to use life support systems, a patient will continue to receive all appropriate medical and nursing care to relieve pain and suffering.

What happens if the patient cannot make a decision about life support?

Sometimes patients reach the point where they are no longer able to make decisions for themselves, such as when a person is in a coma.  If an advance directive exists, it will be followed to the extent that it applies to the patient's condition.  If no advance directive exists, then the patient's family, following Ohio law, will make decisions for the patient.  The patient's own personal values or wishes, if known, will direct these decisions.

 A nurse, doctor, social worker, chaplain or member of the Bioethics Department can help the decisionmaker reflect on these patient values.  The decision should express the best judgement as to what the patient would want and not the decision-maker's own personal ideas or feelings.

Young children are not able to make medical decisions for themselves, so parents or guardians are responsible for acting in their children's best interests by carefully considering options with the medical team.  Older children, especially those who have had medical treatment and understand more about it, may have talked about their ideas and opinions.  If so, these thoughts and wishes should be respected when making medical decisions.  Pediatric nurses, child life specialists, pediatric psychologists, doctors who work with children and bioethicists can help in deciding what is important to consider about what is best for the child.

These difficult decisions can be made easier by thoughtful discussion before the decisions need to be made. Patients should think about end-of-life care and should discuss their wishes with their doctor and loved ones.(Top)

We are Here to Help

As part of your health care team, nurses, social workers, chaplains and members of the Department of Bioethics are available to you for support and guidance.  We encourage you to take advantage of their assistance.

Ethics Resources

Ethics consultation is a service provided to all patients and their families through the Ethics Consultation Service of the Department of Bioethics.  Upon request, the Ethics Consultation Service can provide ethical advice related to issues arising in the course of patient care.  There is no charge for this service.  Ask your physician, nurse or other member of the health care team to communicate your request for an ethics consultation.  You may also choose to call the Department of Bioethics directly at 216-444-8720 during normal business hours. On evenings and weekends, you can ask the hospital operator (216-444-2200) to page the Ethics Consultation Service.

Nursing

Nurses can assist you by answering questions or directing you to other members of the health care team.  Furthermore, they can assist you in discussing treatment decisions with your doctor.  They can also help you consider your choices or options and deal with your feelings and concerns.

Pastoral Care

Our chaplains can offer assistance with spiritual or personal problems and needs.  They also can assist you or your family during times of crises.  If you face decisions about life support systems, the chaplains can offer you guidance.  They will help you consider your options and help you deal with your feelings and beliefs.

Social Work

Social workers also are available to you and your family.  They can guide you through the difficult social and emotional questions that can arise during times of illness.  Social workers can help with family stresses and coping with the results of a decision.  The social worker's counsel and information can provide you and your family with additional support to face these decisions together.(Top)

About Organ, Tissue and Eye Donation

After a death has occurred in a hospital, health care professionals are required by law to ask families if they will permit their loved one's organs, tissues or eyes to be donated. Donation is not an expense for the family.  Your wishes regarding donation should be discussed with your family.

Glossary of Terms:

Advance Directive: A document in which a person either states choices for medical treatment or designates someone who should make treatment choices if the person should become unable to make decisions.  Most often the term refers to formal, written documents, but it can also be used to include spoken statements by the patient.

Attending or Primary Physician: The doctor who has the main responsibility for your care while you are in the hospital.  There may be other doctors (consulting physicians, resident doctors) caring for you as well as medical students.

Bioethicist:  A professional specializing in dealing with ethical problems associated with medicine and health care.

Brain Death: Brain damage that is so severe and extensive that the brain cannot recover.  Breathing has stopped, but the circulation may still be continuing because of artificial ventilation.

Breathing Tube (endotracheal tube): A temporary tube passed through the mouth and into the lungs.  Air and oxygen is passed through the tube allowing for artificial breathing.

CPR (cardiopulmonary resuscitation): An emergency procedure that uses external chest compression, cardiac and respiratory equipment, and medications in an attempt to restore the heartbeat and/or breathing.

Decision-Making Capacity: The ability to make choices that reflect an understanding and appreciation of the nature and consequences of one's actions.

Decisional Incapacity: When a patient is unable to understand his or her choices or speak his or her own wishes about his or her care.

Dialysis:  An artificial means of cleansing the blood of waste products and removing fluids from the body when the patient's own kidneys are unable to continue this process.

DNR (Do-Not-Resuscitate):  A medical order indicating that no cardiopulmonary resuscitation (CPR) or any component of CPR is to be performed in the event that the person's heart or breathing stops.

Durable Power of Attorney for Health Care: A written advance directive in which an individual names someone else (the "agent" or "proxy" or "attorney-in-fact) to make health care decisions in the event the individual becomes unable to make these decisions.

Ethics:  A discipline concerned with making the correct or right decision about important aspects of our lives.  Ethics is concerned with the identification and pursuit of values such as patient autonomy or patient welfare.

Ethics Committee: An interdisciplinary committee responsible for developing ethics and patient rights-related policies, and advising on patient care issues and institutional practices, as well as patient and health professional ethics education.

Futile Treatment: A useless therapy that does not benefit a patient in any way toward achieving the goal of improvement in health status or general condition.

Hospice:  A team approach that provides care for the terminally ill in the form of pain and symptom management, and emotional and spiritual support for patient and family, either at home or in a health care facility.

 Hydration: Provision of fluids by any means to prevent dehydration.

IV (intravenous): Needles and tubing used to provide medication, hydration, nutrition, vitamins and electrolytes through a vein in the arm, hand or neck.

 Legal Guardian: A person charged (usually by court appointment) with the power and duty of taking care of and managing the property and rights of another person  (adult or child) who is unable to take care of his/her own affairs.

Life-Sustaining Treatment: A medical treatment given to a patient that prolongs life and delays death.

Living Will: A written advance directive in which an individual states which health care decisions should be made if he or she becomes unable to make these decisions.

Medical Student: A student doctor in the third or fourth year of medical school training.  The student doctor assists the primary and resident doctors in daily care of patients.

Ombudsman: A liaison between the patient and the Cleveland Clinic. The staff of the Ombudsman's Office is available to patients and family members to help investigate and solve problems with medical service or care.  The Ombudsmen report directly to key administrators and have the authority to investigate patient complaints.

Organ, Tissue and Eye Donation: A voluntary decision by the patient and/or family following the patient's wishes to provide access to the eyes, organs or other tissues after the patient has died.

Palliative Care: Medical treatments intended to control suffering and discomfort such as pain medication or treatment of an infection.  These treatments will not cure the patient and are directed at managing the symptoms of the disease.

Palliative Medicine:  A medical subspecialty that manages the symptoms as well as the psychological, social and spiritual problems associated with chronic progressive or terminal illnesses.

Patient Rights and Responsibilities: Statements describing a person's rights when receiving health care and his or her responsibilities as an active participant in that care.

Patient Service Representative: Members of the Patient Services Department can address or direct questions concerning hospital policies and procedures, secure patient valuables and belongings, and provide notary service.

Permanently Unconscious State: A condition of coma in which a patient is irreversibly unaware of himself and his environment, and has a total loss of higher brain functioning, resulting in no capacity to experience pain or suffering.

Persistent Vegetative State: Same as "permanently unconscious state."

Proxy: A person appointed to make decisions for someone else, as in a Durable Power of Attorney for Health Care (also called a surrogate or agent).

Resident Physician: A doctor who works closely with the primary physician to manage a patient's daily care.  The resident is a licensed medical school graduate doing further training in one of the specialties of medicine.

Terminal Condition: An irreversible, incurable and untreatable condition from which there can be no recovery.  Nursing and medical efforts are administered to provide comfort.

TPN (total parenteral nutrition): A special intravenous (IV) solution providing hydration, vitamins, minerals and calories to sustain life.  This IV is usually inserted into a large vein in the neck area.

Tube Feeding (enteral feeding): A temporary artificial method of providing food through a tube inserted into the stomach.  This food is in a liquid form and contains calories, vitamins and electrolytes, and is used when food cannot be taken by mouth.

Ventilator: A machine used to assist or control breathing (may be called a respirator).

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Notes:

This booklet was prepared by the Cleveland Clinic Ethics Committee.

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