The Center for Ethical Solutions

Patient Advocacy

The era of the family doctor who managed patient care has all but vanished in the United States, and with it has disappeared an effective medical manager who was aware of each patient’s unique medical history and medical needs. No longer is one’s family doctor the central repository for one’s medical history. For instance, with a very mobile society, one person may see several different physicians even in the treatment of one illness, and one physical may not be aware of the entire swath of one’s medical and assessment history. And even while treated as an inpatient in a single medical facility, overburdened nurses are often unable to provide quality individual attention, errors on patient treatment charts are common, and “medical managers” may have time just to touch the surface of a patient’s medical needs.

Much of the current discussion surrounding patient advocacy includes questions about appropriate decisions during the end of a patient’s life.  The recent debate over the ‘death panels’ of the public health care reform option and Montana and Washington State’s recent legalization of physician aid in dying are just two of the issues subsumed under the banner of patient advocacy.  In addition to these, however, the Center for Ethical Solutions is pleased to announce that we have received a grant to begin our first planned patient advocacy project by putting together a report on how patients (and their advocates) can work to assure that a patient’s wishes whenever possible (since treatment options vary from state to state) are respected.  The the goal is to help make the public aware of what options are legal in their state and  how they and their family members and other advocates can best document their end-of-life wishes so they are respected, whatever they are.  This report represents a small but critical aspect of the patient advocacy issue that the Center has been fortunate enough to receive funding to pursue.

THE DOCUMENTING END-OF-LIFE DECISION MAKING REPORT

The focal point of this proposed project is a three-part report that would provide a comprehensive but manageable introduction to the myriad considerations that go into making end of life decisions and how best to document them.

Part I, “Client Goals,” will provide insight into the types of issues clients and their families need to consider from a philosophical perspective – What does the client want his or her end of life to be like? For example, does the client worry most about not being in pain, being lucid as long as possible, being around to witness an important life event (e.g. the graduation or marriage of a grandchild), bodily-integrity (e.g. the effects of a stroke, losing a limb), being self-sufficient, being a burden on loved ones, or other concerns that have to do with a person’s concept of self. Such fundamental motivations are frequently overlooked, yet they are vitally important to helping a client choose the proper approach to managing end-of-life decisions.

Part II, “Understanding Options,” will provide guidance on what it is legal to demand or expect. Most people don’t realize that there are a wide-range of options and that they can pick and chose among those options depending on their own personal end of life goals. Options include anything from going to Switzerland to experience death in an idyllic setting to participating in experimental treatments of little therapeutic value but of great potential social value. Choices empower patients and their families, promote closure, and can give meaning even to something as seemingly meaningless as death.

Part III, “Making Decisions Count,” will provide a portal for finding the resources necessary to document a client’s wishes. Since laws are continually changing, this part of the report will provide a list of URLs for all fifty states where the most up-to-date forms and laws necessary to achieve the goals and options identified in parts I and II can be found.

For every state there will be URLs provided for the actual text of the relevant legislation (or regulation) and also specifically for any relevant form(s) available on the Internet. All fifty U.S. states have official websites where current laws and usually also regulations are posted. In most states when a law is updated or changed, the URL for that law on the official website reflects the change, usually within days or weeks of a law being signed by the governor and in most cases before the law takes effect. All fifty states have legislation and/or regulations that specifically deal with the implementation of end-of-life decisions, including topics such as, what is or is not allowed to be delineated in an advance directives; what is required for a valid advance directive; how is competency determined both at the time of writing an advance directive and at the time of implementation. In some states there are sample forms actually written into the legislation or corresponding regulations. In other states there may be standard forms available through the state hospital association or the state bar association. While Part III of the report will have resources for every state, some will be more complete than others based on what is available in that particular state. If for some reason a regulation or an official form is not publicly available on the Internet, it will be included as a pdf to the report. Also note that the Center has a feature about to go up on its website called “Legal Trends in Bioethics.” This column follows proposed changes to the law in all fifty states and some foreign countries on all sorts of bioethics topics, including end-of-life decisions, and is updated every two to three months.

In a few instances there may be an organization such as Choice in Dying (living wills) or NORMAL (medical marihuana) that provide a list of relevant state laws on specific topics. Where such sources exist, they will be provided but only as a secondary resource.

Information is also available for some foreign jurisdictions. Occasionally the Center has interns from foreign countries who can help provide very specific information for their homeland (including links to official legislative websites), for example, we currently have an intern who is an MD studying bioethics in Mexico. Also, given enough leeway (we hire interns on a semester schedule), the Center can recruit interns from specific countries for specific projects. For the most part, however, the Center will depend on secondary sources in English for information on end-of-life regulations in foreign countries. The Center will include information for up to five foreign countries of your choice under this proposal.

Part III of the report will provide a mutli-tiered flow-chart designed to make accessing the necessary information as quick and easy as possible. Each basic option (e.g. power of attorney, DNR, withdrawal of treatment) will have a step-by-step entry beginning with a definition. (For an extra charge, the proposed flow-chart could be converted to an interactive computer program.)

Part III of the final report will include ten entries. The Center will provide a list of what its researchers believe to be the most relevant topics. The final list of topics to be covered will be determined by PinnacleCare, but any additional entries beyond the initial ten will require additional funding.

The following is an example rough draft of what an entry might look like.

Durable Power of Attorney (DPA)(aka medical proxy, healthcare agent, healthcare proxy, surrogate, and other variations on the same basic theme):

1. What is a DPA?
   1. A DPA is a legal document by which someone gives another person the authority to make decisions for him or her should the person granting the authority become incapable of making decisions. The authority only lasts as long as the person granting the authority is incapacitated. (This report only deals with DPAs in the context of healthcare decisions.)

   Note: The client must be of legal age and mentally competent to sign a DPA; the person designated as agent must be of legal age and mentally competent to act as the power of attorney at the time the grantor of the DPA becomes incapacitated.

2. Do you need a DPA?
   1. No:
      1. If the person the client wants to make decisions for him or her is the surrogate decision-maker by operation of law (or if the client doesn’t care who is making healthcare decisions for him or her) no form is necessary (e.g. there is a spouse who is willing to make decisions).
      2. If the client doesn’t want to appoint anyone or doesn’t want the person who will be assumed to have that authority by operation of law to make healthcare decision for the client, then the client needs to fill out another form of advance directive that makes those wishes clear. See entry for Living Will.
   2. Maybe: If there is no spouse but there is more than one child or sibling, the client may wish to designate a particular person among those legally qualified to make decisions. This will help facilitate communication with care-givers and hopefully reduce the risk of family disputes over the client’s care.
   3. Yes: A power of attorney is an absolute necessity if the person the client wishes to have make decisions for him or her is not related by blood or marriage.

   The following steps only apply if a DPA is determined necessary

3. Where can you get the form?
   1. Contact institution(s) where a client is likely to be admitted (e.g. hospital, nursing home, rehab center, hospice, etc),
   2. Acquire that institution’s version of the requisite form.
   3. Complete form (or have client or someone else complete form) to reflect client’s wishes.
   4. Make copy for your files (the client’s files).
   5. Provide each institution a copy for the client’s file.
   Note: It is important that each institution gets its particular version of the DPA. If an institution has its own version of the form on file there is less of chance that the form’s validity will be questioned. If you are lucky, institutions in the same region will use the same form, but you cannot count on this being true.

4. If (1) would mean contacting too many different institutions in too many different venues, use the official State (or  country) form (most states and countries have laws with sample forms written into them).
   1. See (5-1)below for where to get form.
   2. Complete form (or have client or someone else complete form) to reflect client’s wishes.
   3. Get the form notarized whether required by law or not. Note: The more official looking, the more likely the client’s wishes will be honored. Notarizing a form makes it look official.
   4. Make copy for your files (the client’s files).

   Note: The more official looking, the more likely the client’s wishes will be honored. Notarizing a form makes it look official.

   5. Provide each institution a copy for the client’s file.
5. What are the relevant portions of applicable laws?
   1. [A list of relevant websites for finding copies of state specific forms and applicable laws would be provided here.]
   2. If there is anything in the law or on the form that is not clear, get help. If an option the client wishes is not clearly available (or is prohibited) in that State or country, it may nevertheless be possible to help the client achieve his or her goal, but doing so may require some careful planning. In such cases consider asking the client to contact an attorney well versed in end of life issues.

The above is a rough draft of what a flow-chart entry might look like. The rest of the report would include similarly arranged entries on topics such as DNR Orders, Living Wills, Ending Treatment (medical interventions, food, water), Assisted Suicide, Organ Donation, and other end-of-life healthcare decisions that require special consideration.

Other Issues to Explore in the Future:

Quality of patient care is suffering considerably. Patient neglect is a growing problem. Serious complications and death may result from overworked and potentially undertrained staff. Central managers do not have the time to provide detailed management of each individual patient’s illness or care. Medical mistakes are now the leading cause of death within hospitals, and it is suspected that a large contributing factor is the lack of sufficient oversight over each patient’s care. Anecdotes such as surgery on the wrong limb or organ and mistaken double chemotherapy treatments abound

Conversations about policy within the medical community has focused on improving information systems to catch mistakes, but to what extent is the problem caused by the lack of a single person who would be responsible to manage a patient’s care? Even with improved systems, would a critical gap of care remain when a series of overworked healthcare professionals have too many patients to care for and no single person to prevent the patient from getting lost in the shuffle?

In response to this growing problem, the private sector has responded by offering Patient Advocacy services. PinnacleCare, for example, provides medical managers whose primary responsibility is to oversee a customer’s medical care. The purpose is to fill the gap of care with private advocates. While such an innovation from the private sector is promising in many respects, it is financially accessible only to the wealthy.

Other Questions to Explore in the Future:

The Center for Ethical Solutions will explore the gap of medical care, explore the new market response and ask important ethical questions about the quality of medical care for society at large. The Center is considering exploring various questions such as:

(1) Can the medical system as it is currently structured integrate a patient advocacy role into its systems considering that medical practitioners are already overburdened and may not be currently able to handle patients’ medical needs?

(2) What effect will the burgeoning Patient Advocacy industry have on the quality of care to the general population?

(3) Can this innovation be integrated into the medical system such that it is accessible to society at large, or is our society headed to a two-tiered system of medical treatment defined by wealth? What are the ethical considerations resulting from a two-tiered system?

(4) Who will help society, particularly the poor and uneducated, maneuver their way through the health care system? Social workers and case managers are overworked as it is, and the complexities associated with maneuvering one’s way through the health care system is perplexing even to patients and families with a relatively sophisticated understanding.

(5) How can patient advocacy be integrated into the practice of medicine without breaking the already overburdened system? May outside helpers be integrated into one’s medical care such that it is financially accessible to society at large? Is there a way to promote more patient advocacy and personal care into the medical system that would facilitate family members, volunteers or even paid professionals to take on the role of patient advocate?

(6) How do the above issues relate to nursing home and long-care facilities that already experience a divergent experience based on financial accessibility?

The Center for Ethical Solutions is looking for scholars interested in exploring this issue and all the facets and ramifications of these issues.

Below you will find a brief synopsis of a proposed report the Center intends to issue regarding education about patient advocacy schemes.