MCLE Self-Study Article

I. Synopsis

The author of this article was a hospice social worker for many years and in that role observed advance health care directives (“AHCDs”) sometimes leading to unintended consequences. The following vignettes illustrate examples of issues that were observed.

A. Don’t Let Me Starve to Death!

Cynthia made an AHCD with her attorney in 2015 pursuant to Probate Code sections 4600 et seq. Following legal counsel’s guidance, she gave very specific directions for her medical care wishes. She indicated that she wanted tube feeding in the event that she was not able to swallow effectively, reasoning that, “I don’t want to starve to death.” She also indicated in her AHCD that she would always want cardio-pulmonary resuscitation (“CPR”) to be attempted. Eight years later she had a dementia diagnosis, was living in a board and care facility, and her son was appointed as her conservator of the person. The son, curious about his legal obligations with respect to medical decisions, consulted with the attorney who assisted with the conservatorship. The attorney directed him to portions of Probate Code section 2355, subdivision (a): “The conservator shall make health care decisions for the conservatee in accordance with the conservatee’s individual health care instructions, if any, and other wishes to the extent known to the conservator.”

Three years later, she was diagnosed with cancer. The son hoped that she would be able to remain in the board and care facility and receive hospice care. Her son was presented by the hospice nurse with a Physician Orders for Life-Sustaining Treatment (“POLST”) form,¹ which would give direction for his mother’s care. The son wanted to sign a POLST that was in alignment with hospice goals of care: “Do not attempt resuscitation”; “comfort focus”; and “no artificial nutrition”—such provisions allowing for a gentler dying process. But he believed that he could not do so, given the directives in Probate Code section 2355, subdivision (a). Meanwhile, the board and care operator said that the regulations that the facility had to follow required that, absent a POLST with the above-described directions, Cynthia would have to be taken to the hospital when her condition further deteriorated.²

B. Don’t Give Me Any Drugs!

Jared was very mistrusting of the healthcare system in general and of the pharmaceutical industry in particular. He struggled with addiction issues earlier in his life and had strong opinions about addictive medications. Being very proud of his sobriety, his AHCD very specifically noted that he was not to be given any “mind-altering” medications, and that he wished to be “alert and to be able to connect with loved ones” through his dying process. This was in alignment with his deeply held spiritual values. In addition to his detailed AHCD, he made his health care agent (his daughter) promise that she would not allow doctors and nurses to administer any such “mind-altering” medications throughout his dying process.

Jared came to have terminal cancer, with significant pain control issues. As a hospice patient living in his daughter’s home, he “toughed it out,” utilizing acupuncture, visualization, and other holistic treatments for the pain, until metastases to the brain left him incapacitated. While his mental faculties left him, the pain caused by his cancer did not. It worsened in fact, leaving him at times moaning and writhing in pain. His devoted and distraught daughter felt compelled to follow her father’s wishes. But hospice nurses asserted that because Jared was now a dependent adult, she, as his agent, was in violation of her fiduciary duties in denying him appropriate medical care.³ In addition to the difficulty in seeing so much suffering, nurses were afraid that they were in violation of their regulations for “repeated failure to provide nursing care” to their patient.⁴

C. No Feeding Tubes!

Angela’s AHCD was very thorough and attempted to anticipate and deal with various possible medical scenarios. Her AHCD, drafted by her attorney, had a grid with diseases and disorders on the X axis and treatments on the Y axis, and checkboxes throughout the grid to indicate whether or not she should receive the treatments listed on the Y axis in the event of disease or disorder on the X axis. Her mother having survived a couple of major heart attacks, Angela indicated that she would want CPR herself. Because Angela heard a horror story about someone who was kept alive for years on feeding tubes in a skilled nursing facility, she indicated that she would not want feeding tubes under any circumstances.

Angela came to have a stroke. While her post-stroke prognosis was favorable, she temporarily lost her ability to swallow and required artificial nutrition until she was again able to swallow. Although her ability to verbalize was very compromised, she was not incapacitated, and she was able to communicate that she wanted to receive artificial nutrition. During her hospitalization, she did a POLST, indicating that she did not want CPR to be attempted, and that she did want to receive artificial nutrition.

The medical social worker noted that there was a problem in that the AHCD and the POLST were not in alignment. The POLST form directs, “review the Advance Directive and POLST form to ensure consistency, and update forms appropriately to resolve any conflicts.”⁵ In the midst of contending with her health crisis, as well as a consequent financial crisis because she was no longer able to work, Angela and her family felt the need to pay her attorney to come and see her to execute a new AHCD.

D. The Lesson

In each of the above vignettes, the AHCD principal gave detailed instructions for medical care in their advance health care directive. However, this led to difficulty when medical conditions later arose that the principal had not anticipated.

The misperception that AHCDs should have very detailed instructions for future medical care makes sense given the historical context of AHCDs. Before AHCDs, patients had little sovereignty over end-of-life decision-making.⁶ Attorney Luis Kutner first proposed AHCDs in the late 1960s.⁷ Given that AHCDs were the only tool known to assert a client’s future wishes for medical care, it made sense that attorneys would push for detailed and assertive proclamations of what clients want or did not want for future medical care. Professor Dresser, a leader in legal and medical ethics, decried the lack of specificity as to future medical choices:

Most people completing directives do not attempt to issue detailed instructions for the variety of situations that could befall them. Instead, they supply only a general indication of how they would like to be treated. Such directives furnish little information to clinicians and families seeking to resolve actual treatment issues.⁸

A deficiency with Professor Dresser’s assertion is that the potential medical issues that can arise are often impossible to foresee. In addition to the problems associated with not having powers of premonition, most attorneys and their clients are not medical professionals. Thus, we lack both a full understanding of the medical issues that clients may come to face, as well as an understanding of the various medical treatments (and their implications) that may be available to clients.

Rule 1.1, subdivision (a) of the Rules of Professional Conduct, describes that in the provision of a legal service, an attorney must act with “competence.” Rule 1.1, subdivision (b) goes on to describe that “competence” requires “learning and skill … necessary for the performance of such service.” An attorney who is not also a medical professional is not competent to counsel clients in making specific medical decisions for diseases and disorders that may in the future befall their clients.

Not surprisingly, a recent review of attorney discipline with the State Bar revealed no instances of attorney discipline for counseling clients to make rigid and specific medical decisions in their AHCDs.⁹ This is partly attributable to the fact that the examples given above are less common. It is also due in part to the fact that medical decisions, as detailed in AHCDs, are often not followed in the medical setting.¹⁰ A variety of factors lead to this disconnect between the AHCD and the medical care eventually received, from physician bias to an understanding that a patient’s wishes, detailed years prior, may be inconsistent with present circumstances or wishes.¹¹ Whether an attorney-drafted AHCD leads to disastrous results or is disregarded in the medical setting, the lesson is the same: Specific and rigid medical decisions in AHCDs do little beyond giving a false sense of security.

II. The Attorney’s Role With Respect to the Advance Health Care Directive

A. Advance Care Planning Defined

In the evolution of patients having sovereignty over medical decisions at the end of life, the AHCD represented a unique tool when it came into prominence in the 1970s and 1980s.¹² The difficulty was that, “[i]f the only tool you have is a hammer, you tend to see every problem as a nail.”¹³ That is, when the AHCD is seen as the only tool for communicating and asserting a patient’s wishes for end-of-life care, the attorney-drafted AHCD is inappropriately called upon to somehow predict all possible medical scenarios and give appropriate directions for each of them.

The AHCD should be one tool in advance care planning (“ACP”).¹⁴ ACP is ideally comprised of a well-drafted AHCD, conversations with health care agents (“agents”), loved ones, health care providers, and possibly the execution of a POLST. The AHCD has to be placed in its proper perspective within ACP. Historically, the AHCD was ACP, but now it should be an element of, not the entirety of, ACP. “The main objective of advance care planning, rather than advance treatment decisions, should be to prepare patients and surrogates to work with their clinicians to make the best possible in-the-moment medical decisions.”¹⁵

Much of what that preparation looks like is ongoing dialogues between the AHCD principal and their agent. The attorney should direct the client to review each part of their AHCD with their agent, and to do so over time. “[ACP] is a process, not an event. In the initial phase, it involves thought, conversation, sharing and documentation. Then it requires periodic review as patients age and as their health and priorities change.”¹⁶ A study of changes in treatment preferences of older persons facing serious illness found that preferences change significantly (and often unpredictably) over time.¹⁷

This shifts the attorney’s counsel regarding the AHCD from one of making advance decisions about medical treatments to one of educating clients about ACP and the AHCD’s place within it. ACP is largely about conversations: the client/principal should be directed to have discussions with their agent (and possibly their medical provider). The client should be advised that while these dialogues can initially be difficult to broach, they generally are quite valuable for principals and agents. When a principal and agent connect to review ACP, it can be very intimate and rewarding, ideally leaving both of them with increased clarity and confidence.¹⁸ So important are the ongoing communications between principals and agents that the author’s practice is to talk about the benefits of ongoing conversations with agents from the outset of any discussion of the client’s AHCD.

B. An Example of Good ACP

In the book Being Mortal, Atul Gawande described being in the role of surrogate decision maker (along with other family) when his father was undergoing surgery for a tumor that was pressing on his spine.¹⁹ The tumor was causing a worsening paralysis. While the family was waiting at the hospital during the procedure, a surgeon came out and told them that his father’s heart rate was in an abnormal rhythm, his blood pressure had dropped precipitously and that he was in grave danger of a heart attack. He might die on the operating table if they continued. Meanwhile, because of the nature of the tumor and the procedure to remove it, stopping the procedure carried with it the serious risk that he would be left quadriplegic. Thus, the family was left with the decision of either telling surgeons to proceed with the surgery, risking that their father might die on the operating table, or telling them to stop the surgery and face the likelihood that he would eventually become permanently paralyzed.

Persons in such a surrogate decision-maker role might see themselves as stuck in an impossible situation: forced to either possibly cause their loved one’s death or condemn their loved one to paralysis. The family was not burdened with making such a decision themselves, however. Fortunately, before and during his illness, their father communicated his wishes and fears regarding health and health care to his family. Thus, they knew well that his biggest concern was becoming paralyzed and thus burdening his wife and family. With that information, the family was not themselves deciding what to do. Because of the many conversations leading up to that day, they knew their father’s wishes, and merely spoke to the surgeon on his behalf. The surgeons were able to go on and successfully complete the procedure.

It is unlikely that an AHCD could anticipate and give direction in the circumstances that the Gawande family faced. As noted above, in a situation like that, the surgeons were not pouring over the father’s AHCD, searching for direction during the surgery.²⁰ Everyone successfully navigated those choppy waters because of good ACP.

C. An Example of Bad ACP

While a client should be advised to talk about their wishes for health care, as well as their fears, a client should be advised against eliciting promises from agents. Many an agent and/or loved one has been burdened by a promise, for example, to keep a principal out of a care facility.²¹ As with the conditions that come to surround future medical decisions, we often do not know the circumstances of caregiving until they arrive. Whether putting wishes down in writing, or sharing them verbally with an agent, a principal would do well to understand that future occurrences do not always arrive as they are expected to, and the expression of future wishes should take this into account.

D. ACP: Have Ongoing Talks with Your Agent

Just as an attorney should not speak of trust funding merely once and expect that trust funding has been dealt with, so too an attorney should not assume that mentioning ACP on only one occasion will be sufficient. Ideally, ACP should be discussed multiple times in meetings with clients and should also be mentioned in the attorney’s closing letter. The attorney should anticipate obstacles to good ACP for clients and assist clients in overcoming them. For example, an attorney could ask their clients when they anticipate speaking with their agents. Attorneys can ask clients if they have any hesitations in engaging their agent in a discussion of the clients’ wishes and offer counsel if needed.

In a similar vein, an attorney can ask clients how they may prompt themselves to periodically discuss their health care wishes with their agents. For example, a client could be encouraged to mark his or her calendar every Easter or Thanksgiving, or, perhaps, on the anniversary of an illness or a loved one’s death. When seeing clients to review or update their estate planning, attorneys can take the opportunity to make sure that their clients are in periodic conversation with their agents regarding their health care wishes.

E. End-of-Life Decision-Making

Coming back to the question of what kind of directions an AHCD should have for medical treatment in the future, Probate Code section 4701 provides the statutory advance health care directive form. Subsection 2.1 of the statutory form gives succinct direction: Two options are offered to a principal:

Choice Not To Prolong Life: I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and burdens of treatment would outweigh the expected benefits,

OR

Choice To Prolong Life: I want my life to be prolonged as long as possible within the limits of generally accepted health care standards.

F. An Example of a Good Advance Health Care Directive

In the role of hospice social worker, the author recalls observing an agent-son equivocating during a hospice visit to begin his father on service. The father was dying: no longer eating or drinking, sleeping nearly all of the time, his breathing starting to become labored. The son struggled with the decision to forgo treatments that could perhaps give him a little more time with his father.

The son had arranged a hospice admission visit and the hospice nurse and social worker were now present in the home to begin his father on hospice. The son now wondered about more tests, considered possible positive outcomes from another hospitalization, and pondered aloud something he had read about a new experimental treatment. The hospice nurse respectfully suggested that we review the patient’s AHCD, which she had received from the patient’s doctor’s office. The nurse read aloud the language from the statutory AHCD form pertaining to the “Choice Not To Prolong Life.”²² The son had no more questions. The Probate Code’s to-the-point phrasing was easily accessible in a way that longer, or more detailed expositions of the same sentiment would not have been. The concise wording that encompassed myriad possible scenarios left the patient’s wishes in that situation abundantly clear. The agent-son, while moved, was immediately thereafter grateful for the guidance to follow the patient’s well-documented wishes.

III. What About Clients Who Want to Make Specific Medical Decisions in Their Advance Health Care Directives?

How does an attorney respond when their estate planning client says, “[w]hen I do my advance directive, I want to include a DNR.” To begin, the attorney should gently explain to the client that a do-not-resuscitate (“DNR”) order is a medical order signed by a client/patient and a physician, and that an AHCD therefore cannot contain a DNR. The attorney would also do well to explain that the reason for this is that the decision to forgo CPR is one that should be made with the counsel of a physician, not an attorney. The attorney should further explain patients are typically indicating a DNR status within a POLST form, which contains other elections for medical care during serious illness as well.²³

Attorneys who regularly counsel clients in making AHCDs should consider making POLST forms available to clients in order to direct them to the appropriate document with which to indicate their specific wishes for future medical care.²⁴ The attorney should note to the client that an executed POLST is not appropriate for all medical patients. Rather, it is generally for patients who are facing life-limiting illness.²⁵ But even if a client does not appear to be an appropriate candidate to fill in a POLST with a physician currently, it can be valuable for a client who has strong feelings about end-of-life medical care to have familiarity with the correct document for noting their decisions. Clients should be advised that the document that emergency responders or emergency room physicians and staff are going to much more likely look to and follow is a POLST, not an AHCD. The author recommends including a blank POLST form in the AHCD section of the estate planning binders of clients who are particularly interested in noting decisions for end-of-life medical care, along with an explanation of the form’s relationship to the AHCD and ACP.²⁶

In addition to helping clients understand the role of the POLST in future medical decision-making, attorneys can also serve clients who may need assistance to see their medical wishes effectuated in a POLST. If there are issues, for example, in a client’s relationship with their provider that make it hard for the client to get a POLST executed that accurately reflects their wishes, the attorney can empower the client to explore with their provider the obstacles that are at play. Alternatively, if problems persist in working with a provider (who, for example, perhaps is inappropriately inserting their own personal or religious views into their patient’s medical decision-making), a client could be counseled to speak with a different provider in order to express the client’s wishes in a POLST.

While attorneys should generally avoid directing clients to memorialize specific future medical choices in an AHCD, there are, of course, exceptions to this principle. For example, a client may indicate that in the event of dementia, they would not want a caregiver to aggressively push spoon feedings. Similarly, consistent with that would be a client’s indication that in the event of dementia, they would not want artificially administered nutrition (or “tube feedings”).

IV. The Big Picture

The AHCD has been, to some degree, the poor stepchild of the estate planning world. “Estate planning” describes the activity of producing such documents as trusts, wills, and durable powers of attorney very well, but the term must bend somewhat to describe an attorney’s assistance producing a client’s AHCD. Similarly, attorneys often struggle with the tendency to apply maxims from other areas of estate planning and the law (e.g., anticipation of specific events or contingencies and giving clear instructions for such) to our work on AHCDs.

A seminal casebook for law students studying estate planning, Wills, Trusts, and Estates had, in its seventh edition, little information on AHCDs, generally advising future attorneys to counsel clients to give specific medical directions.²⁷ Most attorneys who begin practicing within estate planning merely do their best with whatever templates or forms are available to them coupled with whatever advice they can obtain from more experienced attorneys. There has been a dearth of articles written about AHCDs in the Trusts and Estates Quarterly.²⁸

Meanwhile, the issues raised in an AHCD tend to bring up strong feelings for clients and touch on important themes. While deciding on a disposition plan for a trust is a key point in the estate planning process, clients generally understand that by the time said disposition plan is carried out, the client will likely not be terribly concerned about it. But clients considering what to put in an AHCD often understand that they are planning for one of the most sensitive and vulnerable points in their lives.

A comedian once famously said, “[i]t’s not that I’m afraid to die. I just don’t want to be there when it happens.”²⁹ Working with an attorney on an AHCD reminds clients that they are going to be there when it happens. Aside from the natural, almost inevitable fears of death, we live in a particularly death-denying culture.³⁰ Additionally, people also have a healthy fear of a medical system that can increase suffering at the end of life with inappropriately aggressive and curative medical treatments.³¹

In assisting clients with their AHCDs and helping them understand its context within ACP, attorneys have a unique opportunity. Attorneys can both increase the likelihood of their clients’ late-in-life care being aligned with the clients’ wishes and give clients a sense of understanding and peace that their planning is more likely to be carried out.

V. Other Details of the Advance Health Care Directive

A. Who Should the Agent Be?

Of course, an AHCD should indicate an agent and preferably backup agents as well. A client’s selecting co-agents is inadvisable in almost all circumstances. In selecting an agent, the question for principals to consider is who in their life do they think can carry out their wishes for them most effectively. Sometimes the person in a client’s life who is most familiar with health or the healthcare system is not the same as the person whom the principal thinks would be most able to carry out the principal’s wishes. The ability to work in an assertive and respectful way under stressful circumstances are chief attributes of an ideal agent. For some people and their families, decisions are made by things like family consensus, as Atul Gawande described above. While we want to respect that within ACP, an AHCD should list one agent acting at a time.

B. When Does the AHCD Take Effect?

When weighing whether to have an AHCD take effect upon the execution of the document or upon the principal’s incapacity, the practical advantages of removing ambiguity as to the agent’s ability to speak for the principal should be measured against the potential for abuse. As the potential for abuse is generally small, an AHCD’s taking immediate effect makes sense in most circumstances. Also consider that a principal can derive benefit from his or her health care team being able to speak openly with the principal’s agent at many points prior to that principal’s meeting the criteria for being declared incapacitated (as required in a springing AHCD).

C. Who Should Receive a Copy of the Advance Health Care Directive?

The client’s doctor’s office and/or healthcare system should receive a copy. The client/patient should at least briefly review the AHCD with their provider during an appointment in which the client/patient brings the AHCD (when such a review occurs, it is possible that the client may obtain information that leads the client to wish to update the AHCD). After delivery of the AHCD, the client or their agent should follow up to make sure the provided AHCD did indeed make it into the client’s medical record. The agent and backup agent(s) should receive copies. Wallet cards describing that the client/principal has AHCD agents and contact information for those agents are advisable. The details in this paragraph should be discussed with the client and included in the attorney’s closing letter.

D. Dementia

The AHCD is used when the principal is no longer able to express his or her wishes with regard to medical care. For many principals, this will occur when the principal has moderate or advanced dementia. As awareness of dementia and its incidence increase, clients often want to have specific provisions in their AHCDs that attend to the issue of dementia.³² It is advisable for attorneys to make provisions available to clients that speak specifically to dementia.³³

Music and music therapy have broad positive effects for people with dementia.³⁴ Principals can list some of their favorite musicians or genres in their AHCD so that caregivers may play music for them that both gives comfort and stimulates them cognitively. Such a list made by the client can be attached to and incorporated into an AHCD.

E. Pre-Dispute Mandatory Arbitration Agreements

AHCD-related discussions afford attorneys an opportunity to forewarn clients of pre-dispute binding arbitration agreements (“arbitration agreements”). Skilled nursing facilities (“SNFs”) are notorious for presenting new residents or their agents with arbitration agreements along with admission paperwork. Assisted living facilities and even caregiving agencies also present consumers with arbitration agreements. When a SNF asks a principal or their agent to sign an arbitration agreement, the facility “must explicitly inform the resident or his or her representative of his or her right not to sign the agreement as a condition of admission to, or as a requirement to continue to receive care at, the facility.”³⁵ But stacks of paperwork during a busy and stressful time often do not receive the attention that they deserve, and many facility residents or their agents have signed arbitration agreements without giving careful consideration to the issues raised therein.

The California Supreme Court recently ruled that an agent under an AHCD does not have the authority to bind the principal to an arbitration agreement.³⁶ This represents a significant win for the rights of facility residents. Notwithstanding the court’s ruling, a principal can still bind him or herself to an arbitration agreement, and a principal can still be bound by an attorney-in-fact acting under a durable power of attorney (“DPA”).³⁷ In so reasoning, the court contrasted the role of the agent under an AHCD with the role of an attorney-in-fact under a DPA. That is, the court distinguished the AHCD from the DPA³⁸ in its reasoning that a health care agent does not have the authority to bind a principal to a pre-dispute arbitration agreement. In contrasting the AHCD with the DPA, the court left open the distinct possibility of an attorney-in-fact binding a principal to an arbitration agreement. For many principals, the agent under their AHCD is the same person as the attorney in fact under their DPA. The DPA should therefore prohibit the attorney-in-fact from binding the principal to such pre-dispute arbitration agreements. Despite the recent court ruling, and despite a well drafted DPA, there still exists a significant risk that a client could find him or herself bound to arbitration and barred from a jury trial in the event of a future dispute with a facility. The author, in addition to speaking with clients about arbitration agreements, includes information about them in clients’ estate planning binders.³⁹

VI. Conclusion

While there is much written about ACP, the estate planning attorney need not become an expert on such. The basics are to counsel clients to give general information as to their wishes for medical care in their AHCDs. Clients should be directed to have ongoing conversations with their agents and to seek clarification or guidance from their medical provider when they have questions about medical conditions or treatments.

In an area of the law with such complexity and high risk, it can be hard for estate planning attorneys to contemplate incorporating elements of ACP into their busy practices. Although reaching into the area of ACP represents a new way of thinking for many estate planners, it can bring more depth to an attorney’s work and can be invaluable for their clients as they contemplate life’s last chapter.

Sample Provisions for Advance Health Care Directive in the Event of Dementia

If I have developed moderate to severe dementia, I only desire medical care to relieve symptoms such as pain, anxiety, and/or breathlessness. I would not want care whereby the primary intent is to attempt to reverse an acute or chronic illness in order to keep me alive longer. It would be important to me to avoid sending me to a hospital or emergency department unless that was the only way to keep me more comfortable, as such trips can be very traumatic in dementia and not provide a meaningful return in terms of quality of life. For example, I would not want to be transferred to a hospital or clinic for workup and treatment of an infection, for hydration if volume depleted, or to evaluate and treat an altered state of consciousness.

By moderate dementia, I mean my communication abilities are limited, I require daily full-time assistance with some activities of daily living, and that confusion and agitation may be occurring. By severe dementia, I mean that recognition of familiar people and communication is very limited to absent and that I need assistance with all activities of daily living.

If I stop feeding myself due to development of any form of progressive dementia, I do not wish for my caregivers to provide food and fluids under any of the following circumstances:

• I no longer appear to desire to eat and drink
• I do not willingly open my mouth
• I turn my head away or otherwise try to avoid being fed or given fluids
• I spit out food or fluids
• I begin a pattern of coughing, gagging, or choking on food or fluids
• The negative medical consequences or symptoms of continued feeding and drinking appear to outweigh the benefits as agreed in a collaboration between my physician and my surrogate

I do not want to be cajoled or otherwise forced to eat or drink. I do not want the reflexive opening of my mouth to be interpreted as giving my consent to being fed or given drink or misinterpreted as a desire for food or drink. I also do not want the use of artificial nutrition or hydration (feeding tubes and total parenteral nutrition) to occur under such circumstances.

Though care for me at home is preferable to me as a baseline consideration, I also am very cognizant of the stress and impact this may have on the quality of life of my family and on the sensible allocation of both human and financial resources. As such, and in particular if I become combative, assaultive, or aggressive, I hereby not only consent, but also ask to be transferred to a facility better equipped to manage this scenario for either short-term or long-term timeframes. Before I am admitted to a long-term facility, should that be deemed necessary, I would want said facility to affirm its willingness to honor these instructions. If they decline to do so, then I would reject that facility as an option other than as a last resort.

I am also very aware that people with moderate to severe dementia experience changes that commonly result in both partners in the relationship losing the personal intimacy that can be such a crucial part of their lives. I give my spouse my willing support and understanding for my spouse to be a part of other intimate relationships should my spouse wish in such circumstances.

I have given considerable thought to these decisions over time and wish for the instructions in this directive to be followed, even if the person who has the right to make decisions for me as well as my caregivers judge that I appear to be comfortable.

(Author’s note: Some principals may want to alter the wording above to indicate that the provisions would apply only in the case of advanced dementia (as opposed to moderate or severe dementia, as Dr. Johanson noted)).⁴⁰

Sample Provisions to Accompany Advance Health Care Directive

A. Explanation of Physician Orders for Life-Sustaining Treatment

Attached is a blank Physician Orders for Life-Sustaining Treatment (“POLST”) form for your future reference and possible use. The POLST gives seriously ill patients the opportunity to indicate their wishes for medical care. A POLST is filled in and signed by a patient and his or her medical provider, after a conversation between them. It indicates what types of treatments the patient does and does not want at a time when that person’s health is quite compromised. A POLST is included in this section of your binder with your advance health care directive because it is helpful for you to know that, in the future, this document may be useful in noting the details of your health care wishes at a time when you need to have them appropriately noted (and at a time when you will have much more information than you do now). Because most of us are not medical professionals, and none of us has a crystal ball, it is a good idea to not lock your health care agent into decisions that were made long before the relevant circumstances were known. (Some advance health care directives give very firm and particular details about treatment wishes, which can be counterproductive.) The POLST is the appropriate instrument for putting down specifics as to your health care wishes (when the time comes). Another point to including the POLST here is to empower you to perhaps in the future bring up the POLST conversation with your medical provider, should you wish. For a variety of reasons, medical providers can sometimes be slow to broach a conversation regarding treatment decisions described in a POLST.

B. Important Information About Pre-Dispute Arbitration Agreements

As a patient, or as an agent listed in an AHCD, you may at some point be requested to sign admission paperwork for a SNF or a residential care facility for the elderly (“RCFE”). RCFE is the umbrella term for a “board and care,” or an “assisted living” or “independent living” facility. Typically, the SNF or RCFE will ask you to sign a pre-dispute arbitration agreement upon admission. Home health care and caregiving agencies also often have arbitration agreements or clauses with their start-of-care paperwork as well. In the event of a subsequent legal action (for neglect causing injury, for example), these pre-dispute binding arbitration agreements effectively bar injured parties from their Constitutional right to a jury trial. Arbitration agreements instead force people to go before an arbitrator, who could be industry friendly and whose decision is not subject to appeal. Arbitration agreements accompany a small stack of admission paperwork and can be subject to a “lost-in-the-fine-print” phenomenon. Further, patients, residents, or health care agents are often confronted with such paperwork during a highly stressful time.

If and when you are asked to sign an arbitration agreement, or a clause within an agreement that mandates arbitration, you can (and should) decline to agree to it. In the event that you are feeling pressured, one option is to say you want to think about the arbitration agreement and will consider signing it after admission. Later, think about it (very briefly), and then decline to sign it. If an arbitration agreement has already been signed, you have a 30-day window within which to send a certified letter rescinding your agreement to binding arbitration. After 30 days, a rescission may, or may not, free you from an agreement.

Law Office of Kevin T. O’Connor, Santa Rosa, California

Endnotes

1. West and Batchelder, The Evolution and Use of the POLST—Physician Orders for Life-Sustaining Treatment—in California (2018) 24(2) Cal. Trusts and Estates Quarterly 41. ↩
2. Cal. Code Regs., tit. 22, section 85075.3. ↩
3. Welf & Inst. Code, section 15630, subd. (a). ↩
4. Cal. Code Regs., tit. 16, section 1442. ↩
5. Cal. Emergency Medical Services Authority, Physician Orders for Life-Sustaining Treatment, Directions for Health Care Provider (June 2024) <https://capolst.org/wp-content/uploads/2020/10/POLST_2017_wCover.pdf> (as of June 14, 2024). ↩
6. Kutner, Due Process of Euthanasia: The Living Will, a Proposal (1969) 44 Indiana L.J. 534. ↩
7. Sabatino, The Evolution of Health Care Advance Planning Law and Policy (2010) 88(2) The Milbank Quarterly 211. ↩
8. Dresser, Precommitment: A Misguided Strategy for Securing Death with Dignity (2003) 81 Tex. L. Rev. 1823. ↩
9. Cal. State Bar, Attorney Discipline (June 2024) https://www.calbar.ca.gov/Public/Discipline/Attorney-Discipline (as of June 11, 2024). ↩
10. Hooper, et al., Improving Medical-Legal Advance Care Planning (2020) 60(2) J. Pain and Symptom Management 487. ↩
11. Levi and Green, Too Soon to Give Up? Re-examining the Value of Advance Directives (2010) 10(4) Am J Bioeth. 3. ↩
12. Sabatino, The Evolution of Health Care Advance Planning Law and Policy, supra, 88(2) The Milbank Quarterly, p. 211. ↩
13. Maslow, The Psychology of Science: A Reconnaissance (1966) p. 15. ↩
14. ABA Com. on Law and Aging, Advance Directives: Counseling Guide for Lawyers (2018). ↩
15. Sudore and Fried, Redefining the “Planning” in Advance Care Planning: Preparing for End-of-Life Decision Making (2010) 153 Ann Intern Med. 256. ↩
16. Johanson, Getting Advance Care Planning Right (2015) Sonoma Medicine 9. ↩
17. Fried, et al., Inconsistency Over Time in the Preferences of Older Persons with Advance Illness for Life-Sustaining Treatment (2007) 55(7) J Am Geriatr Soc. 1532. ↩
18. Gawande, Being Mortal: Medicine and What Matters in the End (2014) p. 212. ↩
19. Gawande, Being Mortal: Medicine and What Matters in the End, supra, p. 213. ↩
20. Hooper et al. Improving Medical-Legal Advance Care Planning, supra, 60(2) J. Pain and Symptom Management, p. 487. ↩
21. McNamara, Adult Children: Be Careful What You Promise to Your Parents, Santa Clarita Magazine, (May 2014) <https://santaclaritamagazine.com/2014/05/adult-children-be-careful-what-you-promise-to-your-parents> (as of June 14, 2024). ↩
22. Prob. Code section 4701, part 2.1. ↩
23. West and Batchelder, The Evolution and Use of the POLST—Physician Orders for Life-Sustaining Treatment—in California, supra, 24(2) Cal. Trusts and Estates Quarterly, p. 41. ↩
24. Cal. Emergency Medical Services Authority, Physician Orders for Life-Sustaining Treatment (June 2024) <https://capolst.org/wp-content/uploads/2020/10/POLST_2017_wCover.pdf> (as of June 14, 2024). ↩
25. Ibid. ↩
26. See under Sample Instructional Information to Accompany Advance Health Care Directive (A) Explanation of Physician Orders for Life-Sustaining Treatment. ↩
27. Dukeminier, et al., Wills, Trusts, and Estates (2000) p. 350. ↩
28. There have been two articles about AHCDs in the California Trusts and Estates Quarterly: Granof, The New Health Care Decisions Law: Revision and Supplement to Existing Law (2000) 6(1) Cal. Trusts and Estates Quarterly; Soskin, Drafting Advance Health Care Directives (2001) 7(2) Cal. Trusts and Estates Quarterly. ↩
29. Allen, Without Feathers (1975) p. 99. ↩
30. Rando, Grief, Dying and Death (1984) p. 1. ↩
31. Dickenson, Are Medical Ethicists Out of Touch? Practitioner Attitudes in the US and UK Towards Decisions at the End of Life, (2000) 26(4) J Med Ethics 254. ↩
32. Gaster, et al., Advance Directives for Dementia: Meeting a Unique Challenge (2017) 318(22) J of American Med. Assoc. 2175. ↩
33. Sample Provisions for Advance Health Care Directive: In the Event of Dementia at the end of this article, G. Johanson, M.D., personal communication, January 6, 2024. ↩
34. Bleibel, et al., The Effect of Music Therapy on Cognitive Functions in Patients with Alzheimer’s Disease: A Systematic Review of Randomized Controlled Trials (2023) Alz Res Therapy 15(65). <https://doi.org/10.1186/s13195-023-01214-9> (as of June 14, 2024). ↩
35. 42 C.F.R. section 483.70(n)(1). ↩
36. Harrod v. Country Oaks Partners, LLC (2024) 15 Cal.5th 939. ↩
37. Prob. Code, section 4000 et seq. ↩
38. Prob. Code, section 4000 et seq. ↩
39. Sample Instructional Information to Accompany Advance Health Care Directive (B) Important Information about Pre-Dispute Arbitration Agreements at the end of this article. ↩
40. G. Johanson, M.D., a retired hospice medical director, wrote these provisions for inclusion in an AHCD, personal communication, January 6, 2024. ↩

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