This is the third and last blog (at least for a while) concerning incapacity planning. Healthcare decisions are the easiest, most dramatic and least understood area of incapacity planning.

Advance Medical Directives, Living Will, Power of Attorney and Health Care Proxy

Advance Directives (Yes, Advance NOT Advanced)

Patient self-determination is based upon the right of an individual to possession of control of his own person, free from all restraint or interference of others. Union Pac. Ry. V. Botsford, 141 U.S. 250 (1891). The doctrine of informed consent forms the basis of patient participation before treatment can begin. Failure to obtain informed consent is a tort. Cruzan v. Director, 497 U.S. 261 (1990). The famous case of In re Quinlan, 355 A.2d 647 (N.J. 1976) held there is a right to refuse treatment implicit the U.S. Constitution. The U.S. Supreme Court has not concurred, Cruzan, analyzed the right to die as a liberty interest under the due process clause, not under the right to privacy. Under Cruzan a state can require clear and convincing evidence of patient intent and perhaps limit a patient’s expression of intent to writings. Congress, in response to Cruzan, passed the Patient Self-Determination Act of 1990 (“PSDA”). Each state is required to develop a written description of the applicable state law. The PSDA does not require states to promulgate any particular procedure or rule about health care decisions. The PSDA did not change any existing law. It prohibits health providers from requiring patients to sign advance directions. The PSDA requires that facilities receiving federal funds notify patients of their right to make medical treatment decisions.

Delaware fulfilled its requirement under the PSDA in 1993 with 16 Del. C. Ch. 25, Health-Care Decisions. Like Cruzan, and the PSDA, the Delaware Health Care Decision Act does not require any particular form. 16 Del. C. § 2505. The so called statutory form is optional. The State from time to time issues an updated form. I never use it and never recommend it. Recent studies, some published in the American Bar Association Bifocal, suggest that health care providers do not find the listing of patient preferences helpful. The designation of an agent to make health care decisions if the patient is incapacitated is beneficial. We recommend this approach, although of course we will prepare what our clients request.

Delaware fulfilled its requirement under the PSDA in 1993 with 16 Del. C. Ch. 25, Health-Care Decisions. Like Cruzan, and the PSDA, the Delaware Health Care Decision Act does not require any particular form. 16 Del. C. § 2505. The so called statutory form is optional. The State from time to time issues an updated form. I never use it and never recommend it. Recent studies, some published in the American Bar Association Bifocal, suggest that health care providers do not find the listing of patient preferences helpful. The designation of an agent to make health care decisions if the patient is incapacitated is beneficial. We recommend this approach, although of course we will prepare what our clients request.

An advance directive is a document outlining the patient's wishes to be carried out in case of incapacity. One type, frequently called a living will, sets forth the patient's treatment choices, including the possible withholding or removal of life-sustaining treatment, in the event that the person is in a terminal condition or persistent vegetative state. Often these choices are outdated by medical technology.

The second type of advance directive may be called a health care proxy, or a durable power of attorney for health care. This type of directive appoints a surrogate (also referred to as an agent or proxy) to make health care decisions during the patient's incapacity. The agent may also have the power to execute a "do not resuscitate" order, or to decide when life-sustaining treatment should be removed.  The advance directive describes the kind of care the patient prefers and designates a trusted family member or friend to make those wishes known to health care providers.  A patient may be unwilling or unable to deal with particular treatment choices in advance, but wish to designate a trusted family member or friend to rely upon to make health care decisions when the time comes. Such patients may choose to execute a health care power of attorney. 

Palliative care physicians and nurses, among other healthcare professionals, frequently tell us stories and give us examples of medical events when DNRs do not make sense, let alone living wills. If a patient has a terminal disease, and after careful consultation with healthcare professionals has a DNT on the refrigerator and starts to choke on a piece of apple, the patient wants 9-1-1 to be called and an EMT to perform the Heimlich maneuver. After all, death by apple is a bad way to go.

An agent’s authority under an advance directive terminates at death. In most cases, a health care agent does not have the authority to direct the disposition of remains or make funeral arrangements. Those rights are preserved for the next of kin of the deceased.   12 Del. C. § 264.

Who may make an advance directive?

In Delaware, an advance directive may be executed only by a competent adult. An advance directive will remain valid until the principal revokes it, unless it is expressly characterized as a temporary or time-limited power.

Who should have a copy of your advance directive?

Clients should be instructed to provide copies to their primary care physician, any hospital where they have recently been treated, all clinics and HMO offices, family members, religious advisors, and anyone named in the document itself. In addition, the original document should be maintained and readily available rather than secured in a safe deposit box or other inaccessible venue. This can be particularly useful to clients without close family or friends likely to be contacted in the event of accident or sudden medical event.

What is a DNR? Is a Living Will the same as a DNR? (Short Answer – No!)

A do not resuscitate (DNR) order is written by a physician, prohibiting resuscitation of a patient by health care professionals in the event of cardiac or respiratory arrest that ordinarily requires resuscitation efforts. Because the "DNR" is a physician's order (and prerogative), it cannot be incorporated into an advance directive document by the patient. The patient can, however, express his or her preference regarding resuscitation in an advance directive. A patient’s agent under an advance directive can request that a physician enter a DNR order.

POLST and DMOST

In an effort to standardize the use and understanding of DNR and similar orders, a number of states implemented a different approach to the withholding of life-sustaining treatment. The "Physician Orders for Life-Sustaining Treatment" (POLST) movement attempts to engage physicians and patients in discussion, understanding and commitment of the patient and medical community to honoring patient wishes on end-of-life care. The format of these various programs typically includes a standardized form (often with a distinctive color) addressing DNR orders, feeding tube placement, and antibiotics, among other treatment options. The national POLST movement has been fostered and reported on by Oregon Health & Science University; details are online at http://www.polst.org.

Delaware’s version of the POLST paradigm is called DMOST – Delaware Medical Orders for Scope of Treatment. 16 Del. C. ch. 25A.  The statute enacting DMOST was passed in May, 2015.  DMOST provides a single document that functions as an actionable medical order and transitions with a patient through all health care settings in order to clearly indicate their wishes for life-sustaining treatment and CPR. The DMOST is a process and is executed after discussion with the patient or the patient’s authorized representative. 16 Del. C. § 2509A (3).

RECENT TRENDS

Advance Directives for Sex

Sexual relations must be consensual. A person needs capacity to create a will, a trust, enter a contract and to consent. This includes capacity to consent to sex. If one cannot consent, another cannot have sexual relations with the non-consenting person. Sexual Advance Directives allow people facing chronic conditions that threaten their sexual consent capacity the ability to engage in sexual advance planning to preserve the possibility of a sexual life for themselves and their sexual partners.

Iowa case:             Man was prosecuted for rape for having sex with his Alzheimer’s afflicted wife, notwithstanding her apparent desire for him.

Canada case:         Likewise, husband was prosecuted for having relations with his wife, who could not comprehend, but enjoyed the experience.

Advance Directives for Dementia

Some fear dementia worse than death. Dementia is progressive. As one loses the ability to make decisions for themselves, they must rely upon others to make decisions for them. Many give guidance to their health care agent based upon whether they are suffering from mild, moderate or severe dementia. Suggested choices for care are illustrated by www.dementia-directive.org.

To live for as long as I could. I would want full efforts to prolong my life, including efforts to restart my heart if it stops beating.

To receive treatments to prolong my life, but if my heart stops beating or I can’t breathe on my own then do not shock my heart to restart it (DNR) and do not place me on a breathing machine. Instead, if either of these happens, allow me to die peacefully. Reason why: if I took such a sudden turn for the worse then my dementia would likely be worse if I survived, and this would not be an acceptable quality of life for me.

To only receive care in the place where I am living. I would not want to go to the hospital even if I were very ill, and I would not want to be resuscitated (DNR). If a treatment, such as antibiotics, might keep me alive longer and could be given in the place where I was living, then I would want such care. But if I continued to get worse, I would not want to go to an emergency room or a hospital. Instead, I would want to be allowed to die peacefully. Reason why: I would not want the possible risks and trauma which can come from being in the hospital.

To receive comfort-oriented care only, focused on relieving my suffering such as pain, anxiety, or breathlessness. I would not want any care that would keep me alive longer.

We will explore health care decisions in a future blog.