THE RIGHT TO MAKE HEALTHCARE DECISIONS

is a protected individual right held solely by the patient.[1] Recently, federal law [2] and state law [3] expanded the scope of exclusivity of this right to the privacy realm by limiting the sharing of patient information and records. Thus a patient’s spouse, domestic partner, and other family members face increasing obstacles when they seek information from the patient’s records—even though some healthcare providers, perhaps motivated by compassion, are disregarding the legal restrictions.

Nevertheless, spouses, in particular, should be very clear about their ability to make healthcare decisions on behalf of their partners. Spouses often assume that when their husband or wife becomes incapacitated and unable to make medical decisions, they have an automatic right to step into the shoes of their spouse. A patient’s incapacity [4]— his or her inability to understand the nature and consequences of a decision or communicate a decision—may be temporary or permanent. Under either circumstance, the patient’s spouse is not statutorily authorized to be first in line to assume the power to make healthcare decisions for the incapacitated patient.

Indeed, the Probate Code statutes applicable to medical decisions [5] grant no such power to spouses. The code only places a spouse inside the category or class of “family members,” [6] with no priority expressly stated for the spouse. Though many healthcare facilities and providers may create a hierarchy within the class of family members and place the spouse at the top, there is no exclusive legal right for a spouse to make healthcare decisions for his or her incapacitated spouse.

It is well-established in case law that marital status alone does not create agency between the spouses. [7] Nevertheless, spouses are fiduciaries under the law [8] and owe a duty to one another. Still, this duty is not accompanied by a spouse’s authority to act as an agent in making healthcare decisions on behalf of his or her spouse.

Since a spouse has no express successor right to a patient’s right to make his or her own medical decisions, all family members have equal standing in the choice of treatment. A family member may challenge a spouse’s choices as not being in the best interest of the patient. It is even possible that a family member other than the one challenging the spouse may be given the right to make healthcare decisions on behalf of the patient. To further complicate matters, when a patient becomes incapacitated and a spouse’s decisions are challenged by a family member, or family members cannot reach a unanimous decision, or the choices made by the spouse or family members are not deemed by healthcare providers to be in the best interest of the patient, [9] the healthcare providers may ultimately make those decisions. The power may not only shift away from the patient’s spouse but also from the patient’s entire family.

In an emergency, these issues too often lead to a crisis. All parties are frequently unprepared. A spouse facing an unanticipated need to make serious medical decisions for his or her spouse faces an overwhelming burden. The chaotic atmosphere can lead to the healthcare providers assuming the power to make the necessary decisions. By contrast, a patient facing a scheduled surgery has the time not only to consider the issue of future healthcare decisions but also to choose to relinquish decision-making power, should the need arise, through a written or oral assignment to an agent or surrogate. It is an option that many clients should consider long before any medical care is required or contemplated.

AHCDs, Surrogacy, and Conservatorship

Spouses who seek to ensure their ability to make healthcare decisions for one another can make their wishes known in an Advance Health Care Directive (AHCD), a form of protection provided under the Probate Code. [10] AHCDs have replaced the Durable Power of Attorney for Health Care, the former statutory device for this purpose. While AHCD forms may be obtained from healthcare providers and online sources, estate planning attorneys may prepare AHCDs as well, tailoring each directive to fit the circumstances of individual clients. An AHCD is often included in an estate-planning package with other estate documents such as a trust or a will.

Spouses can use an AHCD to express their carefully considered choices about future medical treatment and end-of-life issues. These choices may be modified from time to time with an updated AHCD. Among the topics that may be addressed in an AHCD include organ donation, the decision to allow or forbid an autopsy, pain management, and the use of life-sustaining equipment, among others. With an AHCD, a patient who becomes incapacitated temporarily or permanently will still be able to communicate his or her wishes through this writing, which can be legally relied upon by the patient’s designated agent and the healthcare providers.

The AHCD is the means by which a spouse can assert the authority, granted by his or her spouse, to make healthcare decisions on behalf of his or her incapacitated spouse. If the spouse is named as the sole agent in the AHCD, the spouse holds the exclusive right to assume this authority. If the spouse is named as a co-agent, the spouse will work with the other designated co-agent or agents in making the necessary decisions on behalf of the patient. In some cases, individuals do not want to name a spouse as an agent and will designate someone else. There are many reasons why this may be an individual’s choice. If there is no spouse, the individual will appoint whomever he or she deems appropriate.

The agent or co-agents must follow the patient’s directives. These decisions have been expressed in writing by the patient, who has given his or her agents the power to make sure the patient’s wishes are honored by the healthcare providers in the event the patient is incapacitated. No agent may ignore the expressed intent of the patient.

Another way a spouse can gain exclusive authority to make healthcare decisions on behalf of a husband or wife is through the patient’s oral appointment of surrogacy that is communicated to the healthcare providers. [11] Absent an AHCD—the existence of which is often queried by a healthcare provider or facility during the patient intake or admissions process so that the document, if it exists, can be placed in the patient’s records—a patient may orally communicate his or her choice of a surrogate to act on behalf of the patient. This oral appointment, along with the patient’s specific medical wishes regarding treatment, should be noted in the patient’s records by the healthcare provider. The patient may name a spouse to act as the surrogate who will assume the healthcare decision-making power if the patient becomes incapacitated. The medical wishes of the patient, as recorded by the healthcare provider, must be followed and implemented under the authority of the surrogate spouse. The patient may name anyone as a surrogate to act on his or her behalf.

A surrogate, however, might not have the same expansive authority as an agent named in an AHCD. The patient may not have expressed his or her wishes regarding the full range of circumstances that could emerge during a period of incapacity. A decision by the surrogate that lacks a foundation of evidence of the patient’s intent may be disregarded by healthcare providers who deem the decision to not be in the best interests of the patient. An AHCD provides firmer ground for the spouse acting on behalf of his or her incapacitated spouse. A spouse acting as the patient’s agent under an AHCD has the power to implement the patient’s wishes, which have been expressly stated in a writing. This writing constitutes clear and convincing evidence [12] of the patient’s intent.

A spouse appointed as a surrogate may be absolutely certain of what the patient’s philosophical or spiritual choices would be regarding treatment. However, in the absence of specific evidence of intent in the patient’s medical file, the surrogate is powerless. This is true not only when the patient does not address an issue in the oral communication of surrogacy but also when the oral communication is not properly recorded by the healthcare provider.

The least desirable option available for obtaining the right to make medical decisions on behalf of one’s spouse is a petition to the court for a conservatorship.[13] A spouse or other interested party may request to be appointed as a conservator of the patient. This appointment is subject to objections from other parties. Through proper notice, the patient’s due process rights must be considered, along with those of extended family members. The court may decide to appoint an independent legal representative for the potential conservatee and may also choose to limit the scope of the conservator’s authority. This process can be untimely, cumbersome, and expensive. Conservatorship is a highly scrutinized area of the law and requires expertise.

The execution of an AHCD can avoid the need for a conservatorship. However, if the need for an appointment of a conservator arises, even when an AHCD exists, the good news is that the nomination of a conservator by the patient usually is embodied in the AHCD. Therefore, if a petition to the court is necessary, there will be no controversy regarding the appointee. The AHCD is clear and convincing evidence of the individual’s intent and choice of conservator.

Nonspousal Healthcare Authority

Everyone possesses the precious right to relinquish authority for his or her healthcare decisions, when incapacity arises, to a trusted family member, domestic partner, or friend, as well as a spouse. To do so requires express evidence of intent. The Probate Code generally protects the class of family members, but with no specificity.[14] Domestic partners, if registered with the California secretary of state, are given status equivalent to that of a spouse under the Probate Code [15] and the Family Code.[16] Unregistered domestic partners and friends have no standing under state statutes.

Many middle-aged adults are caring for and assisting their elderly parents. An adult child might presume that he or she has the right to make medical decisions on behalf of the elderly parent when that parent lacks the capacity to do so. Under statutory law, however, no power for this purpose is granted specifically to the adult child. The adult child is only one in a class of family members. All family members have equal standing in the healthcare decisions involving the parent, unless the adult child has been authorized to make decisions on behalf of the patient through an AHCD, surrogacy, or a conservatorship.

Many couples choose to cohabit and not marry. Moreover, same-sex couples are unable to create a legal marital relationship, though they may gain marital rights if they register as same-sex domestic partners.[17] Opposite-sex couples also may resister a domestic partnership if one or both of the partners are over the age of 62.[18]

No matter how parties ultimately weigh the pros and the cons of establishing a legal domestic partnership, an AHCD provides a role for a domestic partner, whether registered or unregistered, in making medical decisions on behalf of his or her incapacitated partner. Further, for opposite-sex unmarried couples, an AHCD can establish their rights to make healthcare decisions for one another even as they choose to abstain from the legal entanglements of marriage.

Another relationship to consider is the parent seeking the authority to make medical decisions for an adult child. A parent is part of the class of family members, in which no one family member has any more power, under statutory law, than another. Further, many of the issues regarding a spouse’s limitations— absent the status of agent (under an AHCD), surrogate, or conservator—will also apply to the parent of an adult child if the adult child is incapacitated.

Once a child attains the age of 18, the right to make personal medical decisions becomes an exclusive right of that adult child. Even if the child is still attending high school, he or she gains this exclusive right at 18, and a parent does not automatically possess sole decisionmaking power when, for example, the child becomes unconscious due to injuries sustained in an automobile accident. Parents too often presume that the power to make medical decisions for their adult children is their right.

Absent an AHCD, parents fall into the class of family members with no more legal standing than another adult family member. Many hospitals create a hierarchy of decision makers and are likely to place the parents of unmarried young adults at the top of the list. However, there are no guarantees under statutory law. Even if the healthcare providers are listening to the parents, should they deem the parents’ decision to be not in the best interests of the patient, they are not obligated to implement the parents’ choices without an AHCD.

Generally, the most efficient way for an individual to protect his or her intent regarding healthcare in the event of incapacity is the execution of an AHCD. A well-constructed AHCD expresses medical choices clearly, appoints an agent or co-agents, appoints alternate agents, and nominates a conservator if needed. In this document, a person is able to direct and instruct his or her agent, who is not only authorized but obligated to carry out the person’s directives. The agent is empowered to speak—and the healthcare providers must listen.

One last consideration are the restrictions mandated by two laws: the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) [19] and California’s Patient Access to Medical Records Act.[20] The major goal of these laws is to ensure the protection of an individual patient’s health information while balancing the need to provide quality healthcare. The violation of these statutes could result in substantial fines for a healthcare provider or facility.

While the laws have resulted in their intended effect of providing more protection for patient privacy, they have also led to more limited accessibility by a patient’s family members to the patient’s medical records. These records are strictly protected from disclosure to anyone other than the patient. To overcome this obstacle, a patient may execute a written authorization for use and disclosure of his or her information, enabling the patient’s agent to obtain needed information. This written authorization should accompany an AHCD. Estate-planning attorneys should make sure they execute the necessary instrument when they draft an AHCD.

With the execution of an AHCD and an accompanying HIPAA authorization, attorneys will help to empower a spouse, a domestic partner, or other family members to make medical decisions on behalf of an incapacitated loved one. The story of Terri Schiavo,[21] which gained national media attention, was a grim illustration of what can happen to a family without a patient’s expressly written intentions regarding medical treatment. For nearly 16 years, Schiavo existed in a vegetative state while her parents and her spouse battled in court over her end-of-life care. Had Schiavo executed a document like an AHCD,[22] this long nightmare could have been avoided. An AHCD will speak for the patient and will enable the designated agent to carry out the patient’s express wishes.

F.A.Q.

The following questions should be categorized as FAQs, or frequently asked questions. Unfortunately, they are questions far too infrequently asked. Most people assume they have the right to make medical decisions on behalf of their spouses or other loved ones with whom they share their lives. And since the questions are not asked, some very important precautionary measures are not taken—and the need for them is discovered only when a crisis arises.

QUESTION: Who has the right to make healthcare decisions for a patient?

ANSWER: The patient. When an individual reaches 18 years of age,¹ the right to make healthcare decisions becomes his or her exclusive right. Only under very specific circumstances can that right be relinquished or taken away.

QUESTION: What if the patient is incapacitated and unable to make a decision? Doesn’t the patient’s spouse acquire that right?

ANSWER: Not necessarily. There is no statutory right for a spouse to become the main decision maker for healthcare issues concerning his or her incapacitated spouse.² In fact, absent the legal status of agent, surrogate, or conservator, a spouse falls into a general category of “family members.” This category stands at the end of the line after the patient’s agent, surrogate, and conservator.

QUESTION: What standing does a domestic partner—opposite sex or same sex—have when the other partner is incapacitated and unable to make a medical decision?

ANSWER: The same as a spouse with the same limitations, but only if the domestic partners have formally established a domestic partnership with the California secretary of state.³ Absent a properly registered domestic partnership, the partner of an incapacitated patient is at the end of the line—and possibly without any standing at all.

QUESTION: Does an opposite-sex domestic partner have more or less standing than a same-sex domestic partner regarding the ability to make decisions on behalf of a partner who is incapacitated and unable to make a personal medical decision?

ANSWER: Same-sex and opposite-sex domestic partners are treated the same. For registered domestic partners, each partner has the same standing as a spouse. If the domestic partnership is not registered with the state, neither partner has a statutory right to make medical decisions on behalf of the other.

QUESTION: What are a parent’s rights when his or her 20-year-old child is incapacitated and unable to make a medical decision?

ANSWER: Under state statutes, a parent falls into the broad class of family members and stands in equal position with all other family members. A parent is given no priority standing.

QUESTION: Are spouses entitled to each other’s medical information?

ANSWER: No. In fact, the Health Insurance Portability and Accountability Act of 1996 (HIPAA)⁴ prohibits healthcare providers from sharing any kind of medical information with anyone other than the patient, except under prescribed circumstances.

QUESTION: Do registered domestic partners have the same standing as spouses in requesting medical information about their partners?

ANSWER: Yes, with the same limitations.—C.V.

1 PROB. CODE §§3901(a), 4670.

2 PROB. CODE §§4600-4806.

3 FAM. CODE §§297-299.6.

4 Health Insurance Portability and Accountability Act of 1996 (HIPAA), Pub. L. No. 104-191, 45 C.F.R. §§160, 164 (enacted Aug. 21, 1996; amended 2002).

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