Legal documents and other end of life considerations

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Overview

“Mother died today, or was it yesterday, I can’t remember.” Albert Camus, The Stranger.

Recently, I and four close friends, who are also professional colleagues, lost a parent or had a spouse lose a parent within weeks of each other. Four out of the five of us are attorneys and one holds both a Doctorate of Medicine (M.D.) and a Doctorate of Jurisprudence (J.D.). It was through this uniquely shared experience that the famous quote from The Stranger popped into my head because it was not until three other friends, who had previously lost a parent, mentioned that the fatigue and immediate mental numbing due to weeks or months of stress, can make it hard in the acute aftermath to process and perform simple items and tasks. And, in light of this, to share what is going on with trusted individuals, reduce one’s workload, and recalibrate the body – physically, mentally, and emotionally. This may be the best advice that I could have received. In turn, I passed it on to my other friends whose were in the same situation as me and we all agreed.

In early March 2024, my colleague at Baylor College of Medicine, Joseph S. Kass, MD, JD, FAAN and I co-presented a webinar for The Federal Bar Association entitled, Alzheimer’s and Other Neurological Conditions- Legal Documents and Other End of Life Issues to Consider.ⁱ The feedback that we received was very positive for physicians, lawyers, and patients or clients alike. Hence, the purpose of this article is to highlight proactive legal instruments that can be taken to mitigate stress, educate physicians of what should be included in letters that address decision making capacity, and giving grace and space to process and recover.

Legal considerations

As indicated in the American Medical Association’s Code of Medical Ethics Opinion 2.1.1 – Informed Consent, “[p]atients have the right to receive information and ask questions about recommended treatments so that they can make well-considered decisions about care.”ⁱⁱ In order to make decisions and give informed consent, a patient must first be deemed to have decision-making capacity. Capacity is distinct from competency and in the context of healthcare decision making, it can only be determined by a physician and is premised on four criteria: (1) understanding; (2) appreciation; (3) reasoning; and (4) communication of choice.ⁱⁱⁱ There are a variety of situations where an individual may not have decision making capacity. For example, a scenario where they are unconscious, under anesthesia, or have a particular medical diagnosis that has reached a certain phase (e.g., Alzheimer’s).

If a patient is deemed not to have decision making capacity, whether through a statute such as being a non-emancipated minor or having (or being) in a particular condition, then a surrogate decision maker steps into the shoes of the patient and must place the patient’s interests and known wishes first.^iv As set forth in the Merck Manual,

If a person is unable to make decisions about personal health care, some other person or people must provide direction in decision making. The general term for such person is surrogate decision maker. If there is no health care power of attorney document in place and no court-appointed guardian or conservator with authority to make health care decisions, then health care professionals usually rely on the next of kin or even a close friend as the default surrogate decision maker. Most states authorize default surrogate decision makers; however, the exact scope of authority and the priority of permissible surrogates vary by state.^v

For adults, in most states, there are statutes that designate surrogates, in the event that an individual either does not have an individual designated in a Durable Medical Power of Attorney or other valid legal document. Additionally, if an acute emergency arises, then a physician may step in as the surrogate if an outside individual cannot be reached or delaying treatment would cause either a patient’s death or an adverse outcome. The caveat on this point is that if a Do Not Resuscitate Order is in place (and some states have two separate forms – in hospital/facility^vi and out of hospital facility), then resuscitation measures may not commence.^vii

Let’s take a practical example – a patient with Alzheimer’s. What legal documents should be executed while the person has decision making capacity?

First, I have often heard the terms “dementia” and “Alzheimer’s disease” used interchangeably. According to UCLA David Geffen School of Medicine,

• Dementia is a general term used to describe a set of symptoms that affect cognitive abilities, memory, thinking, and behavior. It is not a specific disease but rather an umbrella term for a group of symptoms.
• Alzheimer’s disease is the most common cause or type of dementia, accounting for the majority of cases. It is a progressive neurodegenerative disorder that primarily affects memory and cognitive function.^viii

Importantly, while dementia is an umbrella term broadly identifying a range of symptoms impacting cognitive abilities, “Alzheimer’s is a specific type of dementia characterized by progressive memory loss and cognitive decline.”^ix There are five stages associated with Alzheimer’s disease, which include the following:

1. Preclinical Alzheimer’s disease
2. Mild cognitive impairment due to Alzheimer’s disease
3. Mild dementia due to Alzheimer’s disease
4. Moderate dementia due to Alzheimer’s disease
5. Severe dementia due to Alzheimer’s disease^x

These stages raise three critical medico-legal points. First, depending on the stage of Alzheimer’s disease, a patient may or may not have decision making capacity. Second, the ability to legally execute documents will come into play and will trigger a lawyer’s professional responsibility duties.^xi Lastly, depending on when the documents listed infra are initially drafted and signed and/or amended, validity issues and elder abuse issues (both financial and physical harm) may arise.

Therefore, it is imperative to consult an attorney in a particular state who has knowledge of wills and estate issues, has a general understanding of how the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”)^xii applies to patients who no longer have decision making capacity, and has a solid reputation for being both ethical and reasonable. The best time to have the documents suggested in Table A initially executed is before a person is diagnosed with either Alzheimer’s or dementia. Even then, all is not lost in terms of legally executing the documents. What is notable is that the further the progression of Alzheimer’s is, the more likely the documents can be challenged in court.

Table A

Physicians have considerations, too. First, they should ask for past documents if there is a question as to the caregiver or family member’s motives for the patient or the request for a letter regarding decision making capacity. Additionally, a patient’s other medical issues, including urinary tract infections, which can cause significant confusion until treated, needs to be assessed. Lastly, when a physician writes a letter or other document stating that the patient does not have the capacity to make certain types of decisions, the language should expressly include the length of time the patient has been under their care and “this patient lacks medical, financial, and legal decision-making capacity.” This determination should be substantiated by documentation in the medical record that meets medical necessity requirements.

Conclusion

In sum, the physical and mental deterioration of a loved one coupled with the discussion of death are not pleasant topics to discuss. Teaching bioethics for over a decade has helped me navigate these discussions both with my own family, friends, and family in a way that enabled me to focus on the facts and the legal items that needed to be in place. As a result, it was much less stressful to deal with when my Mom went into hospice and after she passed. All of the legal documents were in order and all that was needed were a few phone calls or forms. An attorney licensed in the state handled everything an attorney needed to handle. My own process and that of my colleague gave us additional insights to share with medical students, the next generation of physicians, to illustrate the importance of empathy, the need to recover personally from the loss of a parent, and a positive way that lawyers and doctors can collaborate to ensure that legal letters have the requisite language to avoid downstream issues for both the patients and the physicians.

[i] J.S. Kass, R.V. Rose, Alzheimer’s and Other Neurological Conditions- Legal Documents and Other End of Life Issues to Consider(Mar. 6, 2024), https://mylawcle.com/products/alzheimers-and-other-neurological-conditions-legal-documents-and-other-end-of-life-issues-to-consider/.

[ii] AMA, Code of Medical Ethics Opinion 2.1.1 – Informed Consent, https://www.ama-assn.org/delivering-care/ethics/informed-consent (last visited Jun. 15, 2024).

[iii] B. W. Palmer, et al., Assessment of Healthcare Decision-making Capacity, Arch Clin Neuropsychol, 2016 Sep; 31 (6): 530-540 (citing Grisso & Appelbaum, 1998a; Roth, Meisel, & Lidz, 1977), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5007079/#:~:text=Capacity%20for%20healthcare%20is%20generally,%2C%20%26%20Lidz%2C%201977).

[iv] T. M. Pope, Default Surrogate Decision Making, Merck Manual Consumer Version (Revised Oct. 2023), https://www.merckmanuals.com/home/fundamentals/legal-and-ethical-issues/default-surrogate-decision-making.

[v] Id.

[vi] See https://www.floridahealth.gov/about/patient-rights-and-safety/do-not-resuscitate/_documents/dnro-updated-form-bw.pdf (last visited Jun. 21, 2024).

[vii] See https://www.hhs.texas.gov/regulations/forms/advance-directives/out-hospital-do-not-resuscitate-ooh-dnr-order (last visited Jun. 21, 2024) (providing an Out-of-Hospital Do-Not-Resuscitate Form issued by the Texas Health and Human Services); see also Texas Medical Association, https://www.texmed.org/Template.aspx?id=31771 (last visited Jun. 21, 2024).

[viii] D. Sievert, Alzheimer’s Vs Dementia – What Is the Difference? (Jun. 26, 2023), https://medschool.ucla.edu/news-article/alzheimers-vs-dementia-what-is-the-difference#:~:text=In%20summary%2C%20dementia%20is%20an,own%20distinct%20causes%20and%20characteristics.

[ix] Id.

[x] Supra n. 1.

[xi] See Texas Rule 1.16, https://casetext.com/rule/texas-court-rules/texas-disciplinary-rules-of-professional-conduct/client-lawyer-relationship/rule-116-clients-with-diminished-capacity (last visited Jun. 21, 2024).

[xii] See 45 CFR 164.502(g)(4).

Rachel V. Rose, JD, MBA, advises clients on compliance, transactions, government administrative actions, and litigation involving healthcare, cybersecurity, corporate and securities law, as well as False Claims Act and Dodd-Frank whistleblower cases.