Advance care planning is essential in ensuring that individuals receive the care they want and expect at the end of their life. The following is a list of eight advance care planning lessons:

1. Most Advance Directives Aren’t Worth the Paper They Are Written On

Only a handful of adults create a health-care advance directive, and they typically use a standardized form that doesn’t provide much useful clinical guidance. Even if someone takes the time to complete a directive, there is no guarantee that it will be followed. Often times healthcare providers aren’t aware that the directive exists, or if they know, it’s not in the medical record or easily accessible in the record.

(Related: Majority of Hospitals Fail a Medicare Test)

2. The Real Legal Task of Advance Care Planning Is Appointing and Informing a Health-Care Agent

At common law, the authority of an agent to act for an incapacitated principal didn’t exist. The power is created by statute, so it imperative to understand and follow the legal requisites of state law. With that said, everything else is a communication task, and not easily accomplished through legal documents. But still, the documentation of treatment instructions, usually a living will, has remained the focus of most legislative and public attention. Without knowledge of what’s to come, having a surrogate decision maker is significantly more valuable than a living will, but only when the surrogate is properly informed and educated.

3. Ambivalence

In one study of 189 community-dwelling elders with advanced chronic conditions, researchers discovered that when participants were asked about their willingness to risk physical disability in order to avoid death, nearly half changed their minds over a two-year period, and almost half changed their minds regarding their willingness to risk cognitive disability. Most people are ambivalent about the notion of dying, and our inherent desire to live often results in the renegotiation of when enough is enough.

(Related: Employment of People with Disabilities Initiative)

4. Advance Care Planning Has Stages

Planning is crucial for all ages, not just the elderly. It is necessary to think about whom you would like to make important decisions in the event you were to become temporarily or permanently indisposed. Your perspective will constantly evolve with exposure to family and friends with chronic illness or death and dying; and at each stage your values and priorities can be a part of your advance care planning discussion.

5. Relentless Research Is The Best Trait in a Health-Care Agent

Love and intimacy is no guarantee when it comes to a good surrogate decision maker. Often it is emotions that stand in the way of objective decision making. The most important quality in a health-care agent is the drive to know and discover. You want an agent that is committed to understanding your values and researches first when it comes to medical decisions. What are the facts and options, and how do values and goals lead to a choice under the circumstances? Suggested by Dr. Pat Bomba, a nationally recognized geriatrician, the following four questions can shed light on any critical decision an agent must make:

• Will the proposed treatment make a difference?

• Do the burdens of treatment outweigh its benefits?

• Is there hope of recovery? If so, what will like be like afterward?

• What does the patient value? What is the patient’s goal of his or her care?

(Related: Elder Home Care Workers – A Growing Workforce)

6. An Advance Directive Does Not Equal a Plan of Care

Formal legal documents like advance directives don’t always stand up to scrutiny. Even when directives are clear about a particular decisions, it is not a medical order and may never be revealed in the medical record. Doctor’s orders and standard clinical protocols drive behavior in hospitals and other health institutions. Furthermore, every state permits health-care providers to raise conscience objections and refuse compliance so long as required notice and some level of assistance in transferring to another provider is given.

In the 1990s a group of insightful clinicians in Oregon started the covnersation about how to bridhe this gap between treatments goals and wishes of seriously ill patients and medical orders that actually govern care and treatment. As a result, the Physician Orders for Life-Sustaining Treatment (POLST) program was created. POLST programs have arisen in more than a third of the states under a variety of names: Medical Orders for Life-Sustaining Treatment (MOLST), Physician Orders for Scope of Treatment (POST), Medical Orders for Scope of Treatment (MOST), and others.

7. System Change

Currently, healthcare delivery in the U.S. is complicated and fragmented. As patients experience the road through time, place, and disease, too often they discover little support in making good decisions, and are left alone to navigate a maze of care providers, settings, and confusing information. POLST offers one paradigm for improving care planning for those with advanced progressive illnesses.

(Related: Long-Term Care Costs More Than Expected)

Person-centered care and care planning across the age span requires fundamental system change. Doing the right thing needs to be built into the system. Gundersen Lutheran Health System in La Crosse, Wisconsin, is one facility that has accomplished this task. They have built advance care planning into the system design, ensuring that all adults encounter advance care planning opportunities multiple times, at different times, and in an age-appropriate way for the stage of their life. Staff are trained in advanced care planning skills, and the healthcare system goes outside hospital walls to educate and engage the community in advance care planning. And last, the systems put in place are constantly reevaluated and subject to quality improvement.

8. Lawyers Continue to Have an Important Role in Advance Care Planning

A better suited role for lawyers is that of a provocateur and facilitator. There are a number of quality advance care planning tools and workbooks now available that can be given to clients to kick-start their thinking, inspire meaningful conversations with family and clinicians about future medical decision making, and educate future surrogate decision makers about their role. Discover a list of tools and resources at the webpage of the ABA Commission on Law and Aging: www.ambar.org/HealthDecisions. While these conversations don’t come with ease, with encouragement and some tools to assist, clients are more likely to engage in the process effectively. A customized advance directive will be a document essential to a continuing conversation, not the end of a discussion.

Read more: http://www.americanbar.org/publications/bifocal/vol_34/issue_6_august2013/8_lessons_in_30_years.html

Christopher J. Berry is a Michigan elder law attorney Dedicated to helping seniors, veterans and their families navigate the long-term care maze. To learn more visit http://www.theeldercarefirm.com/ or call 248.481.4000

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Today’s Senior Magazine, August 2013 – New Jersey residents have a new tool through which they can ensure that their health care wishes are carried out by all medical providers.  Signed into law on December 21, 2011 by Governor Chris Christie, the New Jersey POLST (Practitioner Orders for Life Sustaining Treatment) legislation became effective February 22, 2013.  The legislation enables patients to use a standard new form to express their health care wishes and help patients and families with end-of-life care planning.  Unlike a legal document such as an Advance Health Care Directive/Living Will or Health Care Proxy, the POLST is a doctor’s order. 

The new form is to be printed in green or on green colored paper and is to stay with the patient at all times at home or in a healthcare facility. By law, the directives contained on the form must be followed by healthcare professionals.  Jane Knapp, of Right at Home, an in-home agency, attended four training sessions on the POLST and is among the very few individuals in New Jersey trained on the POLST since the law was enacted.  According to Knapp, only a primary care physician or an Advanced Practice Nurse (APN) is legally allowed to complete a POLST on behalf of an individual. 

Aside from being a doctor’s order, the other significant difference between the POLST and a legal Advance Directive is the specific time frame and limited si

tuations which the POLST is designed to cover.  The Advance Directive may be thought of as a broad framework out of which a care plan can be developed while a POLST is specifically designed for individuals with limited life expectancies and can be more specific in addressing the patient’s current condition.  Knapp points out, “The key to POLST is it’s within the context of your own personal diagnosis … it’s very specific … It’s the now; it’s not the future.”

It is recommended that the POLST be reviewed frequently, and if there is a change in medical condition or residential setting, it may be changed accordingly.  Whereas advance directives are designed to apply throughout an individual’s life unless his preferences change, Knapp stated, “The POLST is about immediacy… Every adult should have an Advance Directive but not every adult should have a POLST.”

Goals of Care

The POLST form contains two essential parts, the “Goals of Care” and the “Medical Interventions.” The “Goals of Care” section describes how one would like to live his or her life in the time he has left. The “Medical Interventions” section includes the patient’s preferences on life sustaining treatments including cardiopulmonary resuscitation, intubation, mechanical ventilation, artificially administered nutrition and/or hydration, and other specific medical interventions.

Patients should review their POLST forms regularly since they are so specific.  For example, if a patient has cancer and then goes into remission, his preferences regarding life sustaining treatment may have changed.  He should therefore sign a new POLST.  If a cancer patient grows weary of medical testing or treatment and changes care preferences, a new POLST should be signed.  In fact, according to Knapp, with each change of residence or transition of care – for example, a new hospitalization or entry into rehabilitation – the POLST should at least be reviewed.  The urgency to continually update the form may well prompt more doctor  visits.

Since the POLST is designed for patients who face end-of-life care decisions, the form should be kept in an obvious place in a patient’s home such as on the refrigerator or by the telephone.  Patients are supposed to keep the original POLST with them while their doctor’s office maintains a copy.  Of course, with each new POLST, the old original plus the copies should be destroyed to avoid confusion.

POLST v. Legal Healthcare Directives

While the goals of the POLST certainly overlap with advance directives, such as living wills and health care proxies, a POLST is not designed to replace a traditional Advance Directive.  For example, a health care proxy or power of attorney appoints an individual who will serve as a patient’s health care agent.  This person has the authority to communicate with a patient’s medical team based on instructions that the patient has provided in his or her Advance Directive.  The health care agent can speak for the patient if the patient is unable to speak for himself.  The health care agent can act whether the patient has a terminal end stage illness or whether the condition is not life threatening.  Since it is possible for any individual to contract a sudden serious illness or injury, it is highly recommended that everyone age 18 and older has a healthcare directive.

Unlike a healthcare directive, the POLST does not name a healthcare agent and only focuses specifically on end-of-life decision making.  In fact, it is designed to be completed only by individuals with life-limiting illnesses.  If an individual lacks capacity to communicate his wishes enough for a POLST to be completed, a health care proxy, under an Advance Directive, can complete the POLST for him.

In addition to appointing a healthcare proxy, advance directives exceed the scope of medical issues covered by the POLST by including powers such as the authority to hire medical care providers on the patient’s behalf, do whatever is necessary to keep the patient in his or her own home even if he needs long-term care, hire psychiatric support if necessary, change healthcare personnel and visitation rights.

New Jersey is not alone in implementing the use of the POLST.  The vast majority of states already have POLST programs or they are in the process of developing them.  According to an article printed in the Cleveland Clinic Journal of Medicine in July 2012, the POLST has already been shown to improve a patient’s control over his or her health care.  The form is designed to provide clear instructions about patient preferences that are easy to follow.

Once more physicians receive training to help patients effectively use the POLST, it will be a powerful tool to give patients control.  It also vastly improves the communication between the patient and healthcare providers since it is a form easily recognizable by any medical professional treating the patient.  Nevertheless, all adults should have an Advance Directive to address expected and unexpected situations when a patient cannot communicate for himself.  The best decisions are generally made in advance in non-emergency situations and, now more than ever, those who plan ahead can customize and truly control their medical treatment.

DANA E. BOOKBINDER, Esq. advises seniors and families on asset protection for long term care expenses, disability planning, estate planning, and estate administration.  She practices elder law with Begley Law Group, P.C., in Moorestown, Princeton, and Stone Harbor, New Jersey. Ms. Bookbinder has been certified as an Elder Law Attorney by the ABA accredited National Elder Law Foundation.  She is a past Chair of the Elder and Disability Law Section of the New Jersey State Bar Association and past chair of the Burlington County Probate Committee.  She often lectures to civic and retirement groups, is a frequent speaker for New Jersey State Bar Association Institute of Continuing Legal Education, and has appeared on radio and television to discuss planning for seniors.

JANE KNAPP, Marketing Director for Right At Home, an in-home care assistance and skilled nursing provider,  has been involved at the State level, as the POLST form has evolved, and works to promote understanding of its appropriate use.  She serves as Chairman of the Tri-County Regional Ethics Committee (TREC) and is part of the NJ State Ethics Consortium for Long-Term Care.

For additional information:  visit the POLST national Web site – http://www.ohsu.edu/polst

Contact Dana Bookbinder at 856-787-4227/dbookbinder@begleylawgroup.com

Contact Jane Knapp at 856-795-9707 / jane@rahsj.com

Advance care directives and “living wills” are intended to provide health care workers with guidance on the type of care a patient wants to receive. However, studies show they are not consistently followed and may in fact have little effect on care, in part because the instructions provided within them are often not explicit.

A new alternative – available in many states and under development in others – is Physician Orders for Life-Sustaining Treatment (POLST). The POLST is a standardized form indicating whether a patient wants any of a list of treatments to prolong life.

The list of treatments on a POLST form includes hospitalization, CPR, intensive care, intubation, antibiotics, assisted breathing, and others. After the patient completes the form, a physician reviews and signs it, and it becomes part of the individual’s permanent medical file. It is then available to and honored by all health care facilities.

The Journal of the American Geriatrics Society published a study showing patients who had completed POLST forms were 59 percent less likely to receive medical treatment they did not want than those having only a “Do Not Resuscitate” order.

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