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Florida End-of-life Requirment
Treament Decisions at End-of-lfe


In many respects, scientific and medical advances in this century have made living easier and dying harder. Discovery and innovation in medical technology and clinical medicine have brought remarkable advances in our abilities to prevent and treat many illnesses and injuries. Curative and rehabilitative treatments for previously disabling injuries and deadly diseases now allow many people to resume productive and satisfying lives. On the other hand, many people have become fearful that the combination of old age and modern medicine will inflict on them a dying process that is more prolonged, more difficult, and with greater suffering than would have been a few decades ago. The prevalence of chronic illness and death at an advanced age challenges health care delivery, financing, research, and education systems that were designed primarily for acute illness and injury rather than for serious, chronic or progressive degenerative illness. The treatment that clinicians see as rescuing people from imminent death and that they apply as a matter of course, may sometimes be experienced by patients and families as worse than "death itself". Currently, as a society we neglect the dying, over-emphasize scientific miracles and medicine's curative goals, and pay little attention to the prevention and relief of distress and suffering.

This course is intended to extend understanding of the end-of-life care and to promote a medical commitment to create and sustain a system of care that people can count on for spiritual, emotional and other comfort as they die. This course will review the communication issues that are particularly important to dying patients and their loved ones: barriers in end-of-life care, impact of cultural diversity, and advance directives. Additionally, the course will review current ethical dilemmas and legal issues in end-of-life care, which have created public and professional debate: medical futility, physician-assisted suicide and euthanasia.

I. Introduction

The End of Life in America Today

Every year more than a million Americans die from a variety of causes. Some die easily and comfortably; others die with a great deal of suffering and distress.

Several studies indicate that most patients and families who live with life- threatening and chronic illness can expect to experience multiple physical symptoms and psychological, social, spiritual and practical problems 1,2. Most of these problems add to the patient's and family's sense of suffering and reduce their quality of life. In one study of patients with cancer, inpatients averaged 13.5 symptoms, while outpatients averaged 9.7 symptoms. In all studies of symptom prevalence, pain, nausea/ vomiting, constipation, and breathlessness are very significant. As patients lose weight and become weaker and fatigued, loss of function occurs regularly. For many people, loss of their independence is devastating and a source of considerable suffering. In addition to physical symptoms, many patients and families experience considerable psychological distress, including anxiety, depression, worry, fear, sadness, and hopelessness. While many different fears are expressed, 40 % of patients with advanced illness, where death was expected, were afraid of being "a burden to their family and friends". While 90% of Americans believed it is a family responsibility to provide care for someone who is dying, when a patient needs assistance, the burden of care-giving frequently falls to a very small number of people, who may be ill-equipped to provide that care. In addition to time spent in giving care, financial issues have a significant impact on the patient and family. Even when they have medical insurance, a significant number of patients and families suffer financial devastation. In one study, 31% of families lost most of their savings caring for their loved ones.

The Role of Hospice/palliative Care

According to a Gallop survey, commissioned by National Hospice Organization in 1996, as Medicine developed increased technology to treat illness, death moved out of the home and into institutions. People died, shielded from the families and community's sight, usually behind hospital doors. As care for patients shifted into institutions, a generalized lack of familiarity with the dying process and death evolved. Only a minority of people, including physicians, has ever watched someone die. In order to help families care for patients with advanced life-threatening illness at home, Hospice began to appear across the United States during the late 1970's 3. The hospice movement received a boost in 1982 when the federal government began reimbursing care for Medicare and beneficiaries, with a prognosis of less than six months. Subsequent decades have seen a marked growth in the number of agencies operating in the U.S. However, of those patients dying from cancer, only about 40% are ever referred to a hospice agency. Additionally, while the numbers have increased, patients generally do not spend enough time in hospice programs to experience all of their benefits. In 1995, while the medium length of stay was 36 days, nearly 1/5 of patients died within a week of admission. In 1998, the situation was worse; the medium length of stay had dropped to less than 20 days. More recently, palliative care programs and services have been developing across the U.S., to provide the expertise and standards of practice developed by hospice to patients who have needs for symptom control and supportive care earlier in their illness. Palliative care is also important to those who live with chronic pain and other symptoms. As an area of academic, scientific and clinical specialization or emphasis, the field of palliative medicine focuses on patients with life-threatening medical problems for which cure is not possible. It's focuses on prevention and relief of suffering through the meticulous management of symptoms from early through the final stages of illness. Good palliative care is more than symptom management or management of patients with cancer, a lot more happens to most dying people than the specific event of their death and helping people live well, while dying, requires sophisticated strategies and tools: measuring and monitoring symptoms, functional status, emotional well-being and the burdens associated with illness and treatments.

Recently, JCAHO has provided guidelines for hospitals and providers emphasizing the importance of pain as the "fifth vital sign" and encouraging adherence with appropriate pain assessment and management techniques. Additionally, Florida lawmakers and regulatory bodies, including the Board of Medicine, support the use, consistent with the standard of care, of pharmacological substances with the intention of alleviating or eliminating pain and discomfort without fear of legal recourse.

Informed Consent/refusal

As part of all clinical encounters, the patient's autonomy and right of self - determination is respected. Every adult may accept or refuse any medical treatment, including life-prolonging treatments. This is based on both the common law respect for bodily integrity and the liberty interest articulated in the 14th Amendment to the U.S. Constitution. 6,7 There is also an explicit constitutional right to privacy articulated in the Florida Constitution. There are very few exceptions to this rule, which include protection of innocent third parties and society; as well as preservation of the integrity of the medical profession.7 These exceptions are well circumscribed by law and would require extraordinary circumstances to overcome the individual's choices, even if this may result in their death. 8,9

III. Decision -Making Capacity

Honoring patients' choices is relatively easy when people are well and can express themselves. The U.S. Supreme Court in the Cruzan case upheld the principle that an individual has a constitutional right to refuse treatment. 10 Other courts, including the Florida Supreme Court, have affirmed this principle applying it even in cases where the patient doesn't have a life-threatening illness. The Florida statute, Chapter 765 on Advance Directives expands the scope of coverage beyond just "terminally ill" persons. Instead, persons who are diagnosed as either "terminal" or in an "end -stage condition" or in a "persistent vegetative state" can have life prolonging procedures withdrawn or withheld in compliance with their wishes. 11 (See Table 1- Definitions)

Table 1 - Definitions

Terminal condition - a condition caused by injury, disease, illness for which there is no reasonable medical probability of recovery and which, without treatment, can be expected to cause death.
End-Stage Condition - a condition caused by injury, disease, or illness, which has resulted in progressively severe and permanent deterioration, and which, to a reasonable degree of medical probability, treatment of the condition would be ineffective.
Persistent Vegetative State - permanent and irreversible condition of unconsciousness in which there is:
  1. The absence of voluntary action or Cognitive behavior of any kind;
  2. Inability to communicate or interact Purposefully within environment

765.101 FL STAT (2001)

Any competent adult may designate a health care surrogate or make a living will expressing their wishes regarding withholding/withdrawing medical treatments. The patient's right to refuse treatment continues even when he/she becomes incapacitated.

Too often critical decisions must be made in the setting of a serious illness when consciousness fades or illness inhibits the communication of the patient's wishes. In this situation, physicians can look to several sources for guidance: advance directives, designated surrogate or proxy. The starting point is determination and declaration of incapacity.

Florida statutes have been simplified and changed to require only one physician, the attending physician, to determine and enter into the medical record that the patient lacks capacity for decision making. This is not a legal determination of competence. Standards for clinical assessment and documentation should include the following: The patient's ability to:

  1. communicate stable choices;
  2. understand information presented (risks, benefits, alternatives, outcomes, deliberation );
  3. manipulate the information in a meaningful way (apply weighing process);
  4. appreciate the consequences of their decision (reasoning).

IV. Surrogate and Proxy Decision-Making

Once incapacity is determined, the physician should determine if the recommended treatments are in the best interest of the patient. Physicians can look to an advance directive, if one exists, or the patient's surrogate or proxy to make decisions regarding life-prolonging medical treatment. By doing so, the physician is using the criteria that courts generally rely upon. In the case of advance directives (living will and health care surrogate), substituted judgement is used to determine what the patient would have wanted under the circumstances regarding life-prolonging treatments. If the patient has not executed an advance directive (living will, or designated a surrogate) or the surrogate is no longer available to make decisions, the Florida law allows a hierarchy of individuals who are available, willing or competent to act.
(See Table 2).

Table 2 - Proxy-deciders In Absence Of Advance Directives

  1. legal guardian
  2. spouse
  3. majority of adult children
  4. parent
  5. majority of adult siblings
  6. adult relative (regular contact and familiar with beliefs)
  7. close friend

765.401 FL. STAT. (2001)

Proxies' decisions are also based on a substituted judgement principle (what decision the proxy reasonably believes the patient would have made under the circumstances). In Florida, different from the appointed health care surrogate, proxy's decisions to withhold or withdraw life-prolonging procedures must be supported by clear and convincing evidence that the decision would have been the one the patient would have chosen (prior statement, examples of values and beliefs). These should be documented in the medical record.

V. Advance Directives

Surrogates and proxies often find themselves facing difficult dilemmas, often without preparation or experience in making life-and-death decisions on behalf of seriously ill patients. A variety of factors complicate efforts to translate the ideals of patient autonomy, and substituted judgement into clinical practice. These include emotional burdens on the family (information overload, vacillation, grief), and inadequate time for decision-making. Conflict resolution requires special skills in communication and patience on the part of providers. Recognizing the major role of surrogates and proxies, the complexity of end-of-life decision-making, and the predictable process of decisional conflict, should alert physicians of the importance of preparation. Preparing patients and families for stages of decision-making should begin prior to a crisis. Advance directive planning can be used to enhance the communication process between providers and patients and families. Ideally, these structured discussions will help patients, surrogates/proxies and providers explore personal values and goals about health and medical treatments. The goals of such discussions include:

  1. shared understanding of patient values and preferences;
  2. patient centered decisions;
  3. avoidance of over-and under treatment;
  4. reduction of burden on surrogate decision-making;
  5. reduction in use of unwanted health care resources;
  6. empowering patient and surrogate/proxy.

These discussions can be documented and should serve as guidelines for providers and surrogates/proxies in future care. A number of advisory documents are available. 12,13 Two mechanisms to document relevant values and preferences are available in Florida and in all states:

  1. instructional directives, such as living wills; and
  2. surrogate directives, such as durable powers of attorney for health care, which expressly designates a surrogate to make health care decisions.

Federal and state statutes and the Cruzan case give legal weight to the importance of advanced care planning. Florida law provides that an advance directive may include an anatomical gift. Information regarding advance directives is mandated, by 1991 Federal law, to be provided prior to admissions to hospitals, nursing homes and enrollment in HMOs. However, Florida law explicitly provides civil penalties to any institution that requires patients to execute advance directives. Additionally, Florida statutes have expanded the use of "Do-Not-Resuscitate Orders" (DNRO), a special form of advance directive. The DNRO is specific for withholding and withdrawing CPR and must be on a special form provided by the statute. Patients can even wear special tags. 14 The law provides that when properly executed, the DNRO may be honored by hospital emergency personnel, nursing home staff, assisted living facility staff, home health agency personnel, hospice care teams and adult family home providers. Civil liability protection is extended to include these groups.

VI. Special Issues With End-of-life Decision-making

A. Communication

Physicians play a key role in advance care planning. Research shows that most patients believe it is the physician's responsibility to start advance care planning and will wait for the physicians to initiate the process. There are considerable barriers, which impede the communication process. Physicians are:

  1. too mechanistic, use technical terms, ("persistent vegetative state") or are too vague ("no heroics");
  2. uncomfortable in discussing prospects of death and dying- (sends the "wrong message", concedes "defeat", patients don't understand or will be overwhelmed);
  3. too busy, discussions are too time-consuming and not reimbursable;
  4. unaware of cultural differences (avoidance of discussing bad outcomes, reliance on family decision-making) which impact on patient's self-determination;

The AMA's material for education of physicians regarding end life care, and a number of others, have called for enhancement of physician's communication skills in dealing with patients and their family's decision-making regarding end-of-life care.15-17 They have published steps for successful advance care planning. (Table 3)

Table 3- Five Steps For Advance Care Planning

  1. Introduce the Topic
    1. straightforward and routine
    2. explain terms and process
    3. determine comfort level
    4. identify surrogate/proxy
  2. Structure Discussions
    1. involve surrogate/proxy
    2. describe scenarios/options for care
    3. elicit patient values/goals
    4. use worksheet
    5. address inconsistencies
  3. Document Patient Preferences
    1. enter into medical record
    2. ensure portability
  4. Review and Update
    1. follow periodically
    2. discuss and document changes
  5. Apply Directives
    1. determine applicability
    2. read/interpret directive
    3. consult surrogate/proxy
    4. ethics committee for disagreements
    5. carry out treatment plan

Since physicians are responsible for actual medical orders, it is most appropriate that they establish an understanding of the patient's wishes through a dialogue and shared decision-making prior to the crisis of a life-threatening illness or other significant change in health status. Such discussions about future care permits patients to understand their own values and physicians and families/proxies to learn the patient's goals preferences and needs. The process helps relieve anxieties and fears and alleviates further confusion and conflict. Whenever possible, physicians should routinely initiate advance care-planning discussions with every adult patient in his/her practice. Most patients will welcome the opportunity to discuss these matters. If the patients aren't ready, the physician should not force the matter, but should be supportive and provide information. A critical success factor for advance care planning is the ability to structure discussions together with the patient and/or their surrogate/proxy. Family conflicts don't go away just because there is a document appointing a surrogate/ proxy. Involvement of the surrogate/proxy decision-maker in discussions and planning allows them to have a thorough and explicit understanding of the patient's wishes and will diffuse potential misunderstandings and conflict later. Educating the patient and surrogate/proxy to make informed choices can be accomplished by discussing relevant clinical scenarios. The discussion should develop an understanding of patients goals related to health and illness. By discussing past experiences and personal values, a patient, their surrogate/proxy and the physician can get a sense of where specific lines should be drawn for withdrawing or withholding treatments.

B. Cultural Diversity

Cultural Diversity is an important part of health care and a necessary part of end-of-life discourses and practices. Several studies have shown that the actual completion and use of advance directives is significantly lower among minority patients. 18-20 They suggest that African Americans and Latinos, in particular, who historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right to autonomy that an advance directive is designed to ensure. Additionally, Asian as well as Latino patients are more likely to hold a family-centered model of medical decision-making, rather than the patient autonomy model. These findings suggest that physicians should ask their patients how they wish to receive information and make decisions about end-of-life care. It is important for health care providers not to become anthropologists, but to be interested in cultural values and biases and build on these practices. This promotes understanding and demonstrates respect at an important time for patients and their families. (See Table 4)

Table 4 - Cultual Diversity in Dying - Guide For Improving End-of-life Care

  1. Prepare For Counseling
    1. acquire basic knowledge of patient's cultural values, health beliefs and community experiences
  2. Enhance Communication
    1. bridge language barriers
      * trained interpreters are ideal. If volunteer or family interpreters are used, be careful that patient's decision are expressed, not the interpreter's.
    2. determine who is involved in and excluded from decision- making.
    3. understand the patient's illness experience, the meanings attached to illness, the direction of treatment and their attitude toward death.
  3. Build on Cultural Practices and Their Impact on Medical Care
    1. learn about the patient's religious/spiritual traditions.
    2. incorporate, as much as possible, traditional medicine practices in end-of-life treatment decisions.

C. Advance Directive Procedures

Once the patient has come to a decision, a formal advance directive is best to avoid misunderstandings. By Florida law, the directive can be a witnessed (two are required, one of them whom is neither spouse, nor relative) oral or written statement of the patient's wishes and/or designation of a surrogate. The statute contains suggested forms for both, but patients are not required to use them. Patients don't need a lawyer or notary. Florida law also provides for recognition of advance directives executed in other states provided they are in compliance with the laws of that state or of this state.

The statute makes the patient responsible for notifying the provider of the existence of these documents. Patients should be advised to have their advance directive available wherever the patient may receive care (including a wallet card) to ensure the information is available when needed. These documents are in effect unless a time of termination is specified in the directive or the patient revokes them, which can be done at any time. However, it is important to revisit the subject of advance care planning on a periodic basis and update the documents.

In all health care decisions, for the most part, a capacitated patient has the right in this country to make treatment decisions related to their own bodies. Physicians and health care workers have the duty to facilitate patient autonomy. In 1990, the US Supreme court upheld the patient's right of self determination terminating life-prolonging treatments in establishing that the right applies even when patient's are no longer able to direct their own healthcare, and that decisions for incompetent patients should be based on previously stated wishes. The patient's right to specify wishes in advance has been confirmed into statute in all 50 states. Each state has its own procedures. In Florida, advance directives go into effect only when a patient becomes incapable of making decisions and can no longer direct his or her own medical care. Physicians must look carefully at the written document and interpret it in view of the clinical facts of the case. Physicians must look to the surrogate/proxy for interpretation, but must remember the focus is on the patient. The interpretation must be made with evidence of what the patient would have wanted and not what the surrogate/proxy wants. Families and surrogate/proxies cannot countermand what is clearly stated in a living will. Even, in circumstances where the person has not specified their wishes but has appointed a health care surrogate, the surrogate must make the decision based on the patient's values and beliefs. Anyone can challenge the validity of a living will ("he wasn't capacitated when he made it," "she changed her mind but not the will"). If disagreements can't be resolved, assistance should be sought from an ethics committee or legal counsel. The Florida statute has a provision for expedited judicial review of a surrogates/proxy's decisions.

Common Clinical Conflicts

Advance care planning is critical to avoiding common clinical conflicts and should therefore, be considered part of preventative medicine. No discussion, vague statements ("do everything"), narrow focus (DNR discussions only), ignoring capacitated patients ("he's too sick"), surrogates/ proxies with personal agendas (denial, guilt) are all situations which create a heightened atmosphere of crisis and can lead to conflicts between doctors, patients and their families. Beyond DNR discussions, conversations on other palliative goals and measures should be carried out. Remember that unilateral decision-making by physicians under the guise of "benevolent paternalism" is no longer acceptable. Additionally, "slow codes" are unethical and illegal because do not respect patient autonomy and lack informed consent requirements.

Under Florida statutes, physicians and health care providers are immune from liability if they, in good faith, adhere to a patient', surrogate's/proxy's legally valid decisions. The opposite is true if they do not. By disregarding patient's rights, health care providers and facilities are subject to professional discipline, revocation of license, fines and malpractice suits. However, the statutes do make provision for disagreement. The law does not require a health care provider or facility to commit any act, which is contrary to their ethical beliefs concerning life-prolonging treatments. There are procedures to follow in such situations, which include giving the patient written information regarding the policies on admission, and transferring the patient at least within seven days to another provider/facility.11 Otherwise, the wishes of the patient, surrogate must be carried out or judicial intervention sought. In some instances, use of life-sustaining or invasive interventions may only prolong the dying process and providers may determine that these are futile treatments. In clinical practice controversies may arise over definitions of what constitutes futile interventions, and over values and goals of care between providers, patients and proxies. Once again, appropriate communication and trust are key to the resolution of any conflict. 21

VI Absence of Advance Directives

In the absence of a living will or designated surrogate, Florida law recognizes proxy decision-making (see Table 1). For surrogate and proxy deciders to act to forego life prolonging treatments, the patient must have no reasonable probability of recovering capacity to act him/herself (as determined and documented in the record by the attending/treating physician) and the patient must have a terminal, end-stage condition, or be in a persistent vegetative state (as determined and documented in the record by the patient's attending/treating physician and another physician).

Additionally, for a person in a persistent vegetative state who has no advance directive and no available proxy, life-prolonging treatments may be withheld/withdrawn in accordance with procedures set out under Florida law Chapter 765.404. (See Table 5)

Table 5 -Steps For Foregoing Life- Prolonging Treatments For PVS Patients Without Advance Directives or Proxy

  1. Court appointed guardian
  2. Guardian and physician in consultation with medical ethics committee conclude:
    1. condition has no reasonable medical probability for recovery;
    2. withholding/withdrawing life prolonging proceedings is in the best interest.

VII Euthansia And Physician-assisted Suicide

Euthanasia (mercy killing) and physician-assisted suicide (PAS) are highly controversial issues in the U.S. Numerous polls reveal that the American public favors this ultimate expression of the right of self-determination. Fewer studies have examined the attitudes and preferences of patients for euthanasia and PAS. Few patients consider it for themselves and those who do, have been among patients with cancer, HIV infection and amyotropic lateral sclerosis. 23-25 These studies, as well as analysis of 43 cases of legalized PAS in Oregon, show that more than 70% of euthanasia and PAS cases involve cancer patients. They also show that, contrary to general perceptions, depression and hopelessness, rather than pain, seemed to be the primary factors motivating patients' desires for euthanasia/PAS. Furthermore, patient's personal interest in euthanasia and PAS appear not to be stable preferences but may shift over time. Studies that address physicians' views demonstrate similar ambivalence. Despite strong support for euthanasia and PAS, only small minorities of practitioners are willing to assist them or actually take concrete actions. 26 In the state of Florida, both mercy killing and PAS are illegal. Given the tensions between attitudes and practices and the complexity of reasons for patients' requests, it is most appropriate that physicians confronted by such requests, should first attend to underlying reasons, stressors that prompt them. Additional guidelines for handling such requests also emphasize the importance of clearly assuring the physician's ongoing care and comfort for patients and their caregivers. 27,2
(See table 6)

Table 6 - Guidelines For Dealing With Requests For Euthanasia/PAS

C- Clarify the patient's request.
A- Assure your ongoing commitment to care for the patient.
R- Determine and treat the reasons underlying the request.
E- Empower the patient by informing them about their options.


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21. Oregon Statute. Death with Dignity Act.

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