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Advance Directive Registry Now Under Consideration By PA Senate – Keystone Elder Law – Mechanicsburg, PA

A mistake can occur when a health care provider asks a patient prior to treatment if they have an “advance directive.”  The patient says “no,” but really means to say “not in my possession now.”  When such a person accepts the provider’s standard advance directive from the admissions staff and signs it, it negates the well-conceived document that may have been signed previously at a lawyer’s office after family discussion.

Senate Bill 547 proposes a solution which could solve this problem.  Thanks to Cumberland County’s Register of Wills, Lisa Grayson, for making me aware of this proposed legislation, soon after it was introduced and referred to the Judiciary Committee on February 25, 2015. The present draft of the bill says it “furthers a competent adult’s right to control medical decisions.” 

The legislation would amend sections of Title 20 of the Pennsylvania Consolidated Statutes to create  a “registry” in the Department of Health for individuals to submit their advance directive.   Information in the registry would only be accessible to physicians.  The legislation would require that “an attending physician shall make a reasonable effort to determine if a patient has executed a living will and other advance health care directives. An attending physician shall be presumed to have made a reasonable effort if the physician has contacted the registry [to be created by the proposed legislation].”

We keep our clients’ advance directives in an electronic file. It is easy for us to transmit them if needed during a workday.  But since a law office is not staffed 24/7, a better solution is needed to make documents available for medical emergencies that occur outside normal office hours.   Several private providers of document storage already sell internet-based document storage to enable access of documents whenever or wherever needed for a medical emergency.

The legislation would prohibit public access to the registry.  Proposed language says “information in the registry shall be protected from public access, shall only be accessible to physicians and shall not be subject to access under the act of February 14, 2008 (P.L.6, No.3), known as the Right-to-Know Law.”

The legislation makes it possible for a principal to submit an advance directive to the registry, but is silent about whether an agent may do so.  It is not clear if that language is an intentional omission of power of an agent who, according to the language of many advance directives, would be authorized by the principal to make such a submission, absent an intentional legislative barrier or prohibition.

The legislation would require a physician to report a circumstance if the physician becomes aware that an advance directive has been revoked by the principal, but the language as now drafted does not impose such a duty on the principal, the agent or an attorney who may have prepared a revision or revocation of a previously registered advance directive.

An advance directive is a term that includes either a living will or a health care power of attorney document (POA).   We have reviewed many aspects of those documents in prior articles.  Generally, the living will addresses what care should be provided when a patient is in an end-stage, terminal condition and can no longer speak for himself or herself.   The health care POA authorizes allows a principal’s appointed agent to make medical decisions prior to end stage when needed because the patient temporarily is unable to do so, such as can occur at times of emergency treatment.  The health care POA is also a convenient tool to allow the agent to overcome the confidentiality restrictions of the Health Insurance Portability and Accountability Act of 1996 (HIPAA).  Patients are shocked and frustrated when medical providers cite HIPAA restrictions and will not speak to one spouse about the other without a health care POA or HIPAA release.

Generally, we advise that it is foolish and dangerous to download “fill-in-the-blank” legal documents from the internet and sign them without competent legal counsel.  However, with very few modifications, we use an advance directive that is available as a free, downloadable file from the Pennsylvania Department of Health.  We use that format because it should be familiar to health care providers, and therefore should be less likely to require review by a care provider’s risk management department at the time of an emergency.

The Health Department’s advance directive format provides an option that permits an agent to contradict specific details of an advance directive, if the agent believes that is what the principal would actually prefer.  Otherwise, gray areas, where end-of-life facts might not neatly fit into the black and white provisions of a living will, may be subjects of review by a care provider’s ethics committee or risk management department.

Sometimes, I stir the pot by saying that a living will might not be worth the paper it is printed on.  The purpose of that statement is to underscore the value of discussion about a principal’s wishes. The discussion should involve not only the principal and primary agent, but also other family members to make sure they understand both the principal’s general intent and the agent’s authority.  This understanding will lessen the likelihood of disagreements among family members in a time of crisis, and allow the principal to receive the type of care desired.

Realize that an advance directive does not strip the rights of a patient who can speak for himself or herself.  An agent should neither force-feed a principal with end stage dementia who  is resisting nourishment, nor withhold treatment from such a person who expresses any desire to live.  This  type of situation is complex if dementia causes a principal to express both a desire to live and a desire to die, which can occur intermittently on the same day.

It will be interesting to see to how private sector providers of advance directive storage, physicians, and hospitals react to Senate Bill 547.  Some clarifications of the language as now proposed could be helpful.  Clearly, not all of the challenges of advance directives have legislative solutions.

by David D. Nesbit, Attorney