How to Help Clients Prepare for End-of-Life Decisions

Federal and state law on client-patient autonomy

While a step in the right direction, the 1990 Patient Self-Determination Act (PSDA) merely legally requires nursing homes, hospitals, HMOs and hospices participating in Medicare and Medicaid programs to inquire whether the patient has given an advance directive. If so, they must verify it is in the medical record and insert it if it is not there. This law enables a financial planner to persuade a healthcare provider to place a client’s advance directive into the medical record. Unfortunately, as yet, there is no adverse consequence if the healthcare provider for whatever reason refuses to do so. In such a case, the financial planner should fully document the refusal. If a client is subsequently damaged by said refusal, a civil litigation attorney should be immediately contacted and given all documentation so it can be later admitted into evidence.

Additionally, since the validity and enforceability of advance directives are often open to question, advance directives should be drafted with whatever formalities may exist for drafting similar, but more familiar and better-accepted, legal instruments such a wills, trusts and powers of attorney. The good news is that many advance directives can effectively be reduced to a form, as is the case with a Physician’s Orders for Life Sustaining Treatment (POLST ) which instructs emergency personnel on what actions to take while you're still at home. At least 15 states have formally implemented the POLST Paradigm, with national coordination efforts being administered through the Center for Ethics in Health Care at the Oregon Health & Science University. The POLST is widely recognized documented accepted by emergency medical personal, hospices and hospitals. A POLST is the most honored advance directive.

When does the advance directive take legal effect?

Unlike the situation created with an ordinary power of attorney, the agent’s authority under an advance directive does not automatically end when the principal becomes decisionally incapacitated. The agent's decision-making authority may become effective immediately upon execution of the document, or it may spring into action when a specifically delineated event (such as when the attending physician certifies the client is unable to make his or her own medical decisions) takes place. The advance directive then endures beyond that triggering event. The client may terminate the arrangement at any time, assuming the client remains mentally competent to do so.

Adults are presumed competent until determined otherwise. A second physician should confirm a judgment that a client is not competent. In practice, two types of capacity-related issues arise. First, the patient cannot understand and reason about the pros and cons of treatment alternatives, but he or she is still sufficiently cognitive to ably choose a spouse or adult child as a healthcare agent. Here, the attending physician should allow the client to choose a healthcare agent even if the client cannot give informed consent regarding more complex treatment decisions. Second, even though patients may have fluctuating decision-making capacity, the attending physician should give the benefit of the doubt towards opportunities for patients to make their own decisions. When a patient has the capacity to decide, the patient’s wishes trump prior directives and the urgings of a healthcare agent. This specific approach is widely accepted in medical ethics and clinical practice but is found in only some advance-directive laws. A financial planner could include such a request in attorney-prepared documents.

Rights and responsibilities of healthcare agents to the client-patient and their families

The healthcare agent is to make decisions based on the patient’s own wishes and values. This fiduciary duty is recited both in law and in advance directive forms themselves. For example, health-care agents can also give consent to have the patient discharged to home hospice or a nursing facility. A health-care agent may also consent to nonhospital do-not-resuscitate orders, but a healthcare agent’s refusal of CPR will probably not be honored by emergency medical personnel unless there is also a corroborating physician’s order.²

Ordinarily, these situations are not adversarial or litigious, with family members providing important information about what their loved ones would want. Yet even when the advance directive is completed and a healthcare agent has been designated, barriers to effectively translating the patient’s intent remain. Healthcare agents are presumed to know the patient’s wishes, even though their accounts are sometimes inaccurate.³ More significantly, if the ethical imperative to honor the patient’s wishes and their best interest conflicts with the values of the health-care agent, the burdens of decision-making can become emotionally unbearable. Worse still is when the health-care agent has ill motives. In such cases, overriding the health-care agent should at least be considered. Outright removing a healtcare agent for violating fiduciary duty to the patient or overriding a decision on medical treatments may require going to court.

The most likely area where a client’s health-care agent will be stymied

The most vigorously disputed issue in the treatment limitation arena is still the status of artificial feeding and hydration. The courts have been unanimous in holding that artificial feeding tubes (of all kinds) are merely another form of medical intervention that may be withheld or withdrawn under the same circumstances that would justify withholding or withdrawing any other type of medical intervention such as a respirator, dialysis or antibiotic. Major medical professional groups endorse this position.⁴ The contrary position is that feeding and hydration, even when they can be achieved only through tubes surgically or forcibly inserted into the patient's body, are more morally elemental than medical treatment and should be maintained as long as they physiologically keep the patient alive. A number of state legislatures reflect this argument in their living will or durable power of attorney statutes, which are intended to severely constrain the rights of patients and surrogate decision makers to authorize the removal of feeding tubes.⁵ Both the practical wisdom and the constitutionality of these purported restrictions are questionable, but a fuller discussion of this matter is beyond the scope of this article.

Of note, state advance directive statutes specifically excuse a health-care provider who decides, for reasons of personal conscience, not to carry out a valid advance directive, so long as that health-care provider does not impede efforts to have the patient relocated to a different provider who is willing to respect the patient's advance directive. Courts have also generally declined to hold healthc-are providers liable for failure to follow a patient 's or surrogate's instructions to withdraw or withhold particular forms of treatment.

An advance directive may not fly in the client’s nearby state

Nearly all states’ reciprocity laws merely request that out-of-state directives be presumed validly executed. They do not guarantee the advance directive will be interpreted exactly the same way due to default restrictions and differences in how state statutes are interpreted.⁶ If someone in another state wants to challenge the validity of an out-of-state advance directive, the burden of proof is on that party. A financial planner whose client has residency in two states, or travels extensively, should seriously consider videotaping the execution of his or her advance directive, since this easily establishes both the client’s competence and the proper witnessing.

Your client’s palliative care

When the patient or surrogate refuses aggressive, technologically intensive medical interventions, the physician nonetheless has the legal obligation to offer basic comfort, pain control, emotional support and hygiene measures. Failure to do so could constitute negligence or form the basis for professional discipline. Good palliative care may sometimes include the practice of palliative sedation (also called total, terminal or controlled sedation) for distress or suffering during the dying process.

Palliative care does not mean physician-assisted suicide. In every state, it is a criminal offense (as a form of homicide) for a physician to engage in actions that are intended to speed up a patient's death (such as administering a lethal injection), even if a competent patient requested such action.⁷ Similarly, in every state except Oregon, Vermont and Washington,⁸ it is criminal for a physician to go along with a patient's request that the physician supply the patient with the means to hurry up his or her own death (such as writing a prescription for a lethal dose of a medication, knowing fully well that the patient intends to commit suicide by taking that lethal dose). The U.S. Supreme Court has unanimously rejected the assertion that individuals have a federal constitutional right to physician-assisted death.⁹

Palliative care combined with advance-care planning for home-based chronically ill patients has effectively decreased aggressive medical treatment. As a result, patients die at home, which most Americans clearly want.¹⁰ This is why a client should understand the costs and benefits of palliative care and hospice. Palliative care aims to relieve symptoms without curing a disease and is usually covered by regular medical insurance after hospital admission. Although still covered, outpatient palliative care prescriptions will be billed separately. Inpatient prescription charges are generally not covered. Before considering hospice, check on the insurance policy limits for payment. Many hospice programs are covered under Medicare.

By electing to forego extensive life-prolonging treatment and engaging in palliative care, incapacitated clients can better focus on the emotional and practical issues of dying, without some of the negative side effects that life-prolonging treatments can have. If a client wishes to forego medical treatments, financial planners should encourage hospice and strong palliative care in their advance directives. An aspect of this would be eliminating physicians' concerns that prescription of adequate pain relief could cause legal or regulatory issues.

Conclusion

The unquantifiable value a financial planner can give a client and their families is the probable avoidance of unwanted court involvement in medical treatment decisions and the conservation of limited healthcare resources in a manner consistent with client-patient autonomy and self-determination. Financial planning can also diminish the emotional and psychological stress on family and friends that shadows this inevitable final act.

But getting a client to execute an advance directive is no easy task. Existential resistance to contemplating terminal illness and its attendant death, foreshadowed by the ominous legal complexities in implementing an advance directive, keeps their completion rate low among the general public. Additionally, procedural requirements (the need for signatures and witnesses), cultural insensitivity, obtuse language and limited foreign-language availability further lower their rate of completion. No one can execute an advance directive without a pristine legal understanding of what constitutes an advance directive, so this becomes paramount for a caring financial planner.

In the end, the goals of an advance directive (designation of a surrogate and identification of preferences) can be accomplished by asking two queries: "If you cannot or choose not to share in your own healthcare decisions, with whom should we speak?" and "If you cannot or choose not to engage in decision-making, what should we consider when deciding your health care?" These questions can be easily asked by a financial planner and, if necessary, repeated over time as circumstances change.

Emir Phillips, JD/MBA MSFS, ChFC CLU is a student in the Phd Program in Financial and Retirement Planning at the American College. The author wishes to acknowledge the financial support from New York Life Insurance Company, its beneficent shareholders and its Chairman, President and CEO Ted Mathas, without whose exceedingly generous and continuing support of the American College and its Phd Program would not have made this article possible. The author would also like to thank the President of the American College, Dr. Laurence Barton, PhD, Dr. Melisande McCrae PhD and Dr. Wade D. Pfau PhD, CFA for their insights and guidance academically and personally.

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