Health Laws Impact LGBT Folks

Impact of Health Law on LGBT Individuals and Families is the title and subject of a 1½ hour continuing legal education program to be held on Friday, October 12, 2012, as sponsored by the Allegheny County Bar Association, through its Health Law Section, in partnership with its LGBT Rights Committee, which was created in March, 2012.  Highmark underwrites the program.

A panel of experts representing perspectives from across the industry will present an assessment of the new federal healthcare reform law, FMLA [Family and Medical Leave Act], Advance Directives and Health Care Decision Making, and Hospital Visitation and Consent to Treatment for Minors and will discuss the impact of these laws on the LGBT community.

Much of this information will also apply to other non-traditional families.

This program will serve healthcare providers and their attorneys who need to be aware of the unique characteristics and challenges of LGBT individuals and families, as well as other nontraditional families, in the healthcare setting.

LGBT (lesbian, gay, bisexual, and transgender) folks, or individuals in "non-traditional" families, have drawn greater attention during the past twenty years.  In the healthcare delivery and decision-making settings, their personal expectations and interpersonal relationships often become ignored or overridden by application of statutes that grant "default" rights to others, defined by bloodline or traditional legal relationships.  

Awareness, forethought, and implementation are recommended for LGBT folks, their families, and their attorneys to overcome such hurdles.  Absent attention, planning, and documentation, an unwanted, unnecessary crisis might result.

On June 19, 2012, the federal Health and Human Services Department, through its LGBT Issues Coordinating Committee, issued its 2012 Report, entitled "Improving LGBT Health" (PDF form).  Its introduction repeated a national philosophy:

It’s at the heart of the American dream: the belief that if you work hard, if you're responsible in your community, if you take care of your family, then that’s how you should be judged.  Not by what you look like, not by how you worship, not by where you come from, and not by whom you love. 

This belief means ensuring that LGBT Americans have the same protections and opportunities as their neighbors, colleagues, and family members.  And over the last three years, this Administration has undertaken a broad agenda to do just that.”

That report highlighted two concerns, which should be addressed under Pennsylvania law at the ACBA's program:

Of critical importance for LGBT advocates is the CMS position on medical decision-making, allowing LGBT couples greater flexibility to make care decisions for their loved ones.

Similarly, it is important that LGBT patients and their families are more recognized in health care service delivery environments and approaches, including the development of a culturally competent service standard to be followed by healthcare professionals and organizations. * * *

The presenters at the ACBA program will be:

• Robert Wolf, Esq. (Advance Directives, POLST, Healthcare Decision Making) Tener, Van Kirk, Wolf & Moore, PC; 
• Elisabeth J. Poggi, Esq. (Advance Directives, POLST, Healthcare Decision Making) Buchanan Ingersoll & Rooney PC; 
• Sheryl Kashuba, Esq. (Hospital Visitation and Consent to Treatment for Minors) UPMC Health Plan; 
• Vikram Mangalmurti, Esq. (Accountable Care Act) VP Highmark Office of Healthcare Reform; and
• Mark Phillis, Esq. (Family and Medical Leave Act) Littler Mendelson, PC

The program will be held on Friday, October 12, 2012, in the ACBA Conference Center Auditorium, 920 City-County Bldg., 414 Grant Street, Pittsburgh PA, with registration and lunch from 11:30 AM – 12:00 Noon, followed by the presentations until 1:30 PM.

For ACBA members, the cost is $25, and for others, $60.  Registrations can be made online through the ACBA.

"Closure": Change Expectations for End-of-Life

The Closure online multimedia educational project of the Jewish Healthcare Foundation, Inc., of Pittsburgh, PA, "is an initiative to change expectations for end-of-life." 

The Project's goal is "to empower consumers and healthcare professionals with easy-to-access, simple-to-understand information and resources to make educated decisions about end-of-life care."

No one wants to die. But the truth is everyone’s life will someday come to an end. It’s important to think about what you want, and what you want to avoid.

Closure is not going to make talking about death any easier. Nothing can do that. But our resources and tools will make the process of determining what you want at end-of-life less difficult and confusing.

The online presentations are professionally crafted, substantively accurate, seriously sensitive, and efficiently educational.

The Closure 101 Project offers "a curriculum of educational lessons dealing with an array of complex end-of-life issues."  The lessons cover issues arising from a medical diagnosis and treatments that may lead to decline and death.  How can we maintain dignity, respect, and love during such a stressful and demanding process that involves not only the patient, but a family and friends?

These lessons teach in twelve videos with slides, each introduced on that website:

1. Questions to Ask the Doctor -- People often have a lot of questions when they learn that they have a serious illness or that a loved-one has developed a life-threatening disease. Where should you start? What are the most important questions to ask? This lesson will help guide you through an open and honest conversation with your doctors.
2. Prognosis -- Many people with a chronic illness want to know exactly how long they have left to live. While no one can make an exact prediction, understanding your prognosis is very important in determining what treatments you want to pursue. This lesson will explain how to talk to your doctor about your prognosis and highlight what important questions you need to ask.
3. Decision Making -- There are many treatments which are often tried in patients with a serious, life-threatening illness to attempt to lengthen life. Sometimes these treatments are life-saving. Other times, these treatments may make little or no difference in how long or how well someone lives and may increase his or her suffering. This lesson highlights what decisions you may need to make and what to consider when weighing your options.
4. Advance Planning -- It’s important for you to plan ahead while you are healthy and able to make decisions about end-of-life. Planning ahead gives you the opportunity to get input from your family, doctors and religious advisors. This lesson explains why advance planning is important and teaches you how to complete a living will.
5. Hospice and Palliative Care -- Palliative care is appropriate for anyone with a life-limiting disease, including cancer, serious heart disease, end-stage dementia or lung diseases. It focuses not only on physical comfort, but also provides emotional and spiritual care. Hospice is a type of palliative care. This lesson clearly outlines the specifics of both options.
6. Medicare Hospice Benefit -- The original goal of the Medicare Hospice Benefit (MHB) was to support families caring for a dying relative at home, but that has evolved. The MHB now pays for medical, nursing, counseling and bereavement services to terminally ill patients and their families. This lesson outlines the key points of the MHB so that you can better access the services that you need when you need them.
7. End-Of-Life Care for Children -- Despite remarkable advancements in medicine, many children with a life threatening illness will die. In this lesson, you will learn about how and why the experience of serious illness and dying is different for children and see what solutions pediatric palliative care can offer in those situations.
8. Caregiver Stress -- Caring for someone who has become ill or losing a loved one that you were caring for can induce a stress response. We cannot make stress go away but we can change how our brain responds to it. This lesson introduces a series of healthy lifestyle behaviors and the techniques that will reduce the influence of stress on your mental and physical health.
9. Long Distance Caregiving -- Long distance caregiving has its own unique challenges. This lesson provides you with the tools to overcome those challenges. You will learn about available support and resources as well as new techniques to ensure that you are also taking care of yourself.
10. When Your Loved One is Dying -- Being a caregiver to someone who is dying can be a meaningful experience. But you may have a lot of questions about what to expect and how to care for your loved one. This lesson will help you gain a better understanding of the changes that are taking place and explain what to do if something goes wrong.
11. Grief and Mourning -- Death is part of the life cycle that will affect all of us in our lifetime. Grief is one of the most universal human reactions, yet it is unique to each bereaved individual and can be very isolating. In this lesson, you will learn the six tasks of mourning, uncover myths and symptoms surrounding grief and learn where to find support.
12. Religious and Cultural Issues -- Each religion or culture has its own way of dealing with the fear, moral uncertainty and deeper meaning associated with death and dying. This lesson will introduce you to end-of-life traditions from varying religious and cultural backgrounds.

I viewed most videos and recommend them.  There is no "religious" message or agenda promoted, despite sponsorship by a faith-oriented organization.  The lessons seem suitable for all faiths and cultures.

The website also offers a personalized Self Assessment to help customize and specialize online learning.  If you register, the website can retain logged user information to resume viewing sessions later.

These lessons could be the foundation for group teaching or discussion in a community or church setting.

The Closure website lists many valuable collections of resources, such as:

• National Resources: Quick links to useful Web sites and online tools that can help you broaden your knowledge about end-of-life care issues and aid in your decision-making process.
• Southwestern Pennsylvania Resource Directory: A comprehensive guide to resources about end-of-life issues for residents of southwestern Pennsylvania. 
• Helpful Tools: An index of important documents and tools for end-of-life planning that you can download and complete.
• Books and Manuals: A listing of books and manuals dealing with end-of-life care issues.
• Useful Terms: An online glossary of important terms and acronyms for patients and families.

These are valuable end-of-life coping resources that should be made available to patients in treatment centers and hospice facilities everywhere in Pennsylvania.

PA Health Department Posts New POLST Form

On November 16, 2010, the Pennsylvania Department of Health posted on its website a new standard form for Orders for Life-Sustaining Treatment (POLST), revised 10/14/10. 

The form was listed under the website's Quick Links, but does not appear to be the subject of any press releases or further highlighted bulletins.

The concept and implementation of physician-ordered life-sustaining treatment orders is discussed in detail on the national website of that movement -- POLST.org -- which maintains this paradigm:

The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.* * * 

Effective communication between the patient or legally designated decision-maker and health care professionals ensures decisions are sound and based on the patient’s understanding their medical condition, their prognosis, the benefits and burdens of the life-sustaining treatment and their personal goals for care.

The state-by-state implementation map on that website now needs a change.  Pennsylvania should shift from the color grey (no program), to red (endorsed programs).

The Pennsylvania POLST form is explained generally by the Explanation that accompanies it:

Pennsylvania – Orders for Life Sustaining Treatment (POLST) is a medical order that gives patients more control over their end-of-life care. The POLST form specifies the types of medical treatment that a patient wishes to receive towards the end of life.

These medical orders are signed by both a patient’s physician, physician’s assistant, or certified registered nurse practitioner and the patient or the patient’s surrogate.

Completion of a POLST form is only a small step in the process of a patient’s decision-making, and it is critical that this form be used as part of a program for end of life decisions that includes educational support and other aspects of planning for providers and patients.
 
This form was developed by the Pa. Department of Health’s Patient Life Sustaining Wishes Committee and was designed to be consistent with Pennsylvania law. There are significant advantages to using a form that contains standardized language and is produced in a distinctive and easily recognizable format. 

In order to maintain continuity throughout Pennsylvania, please follow these printing instructions: 

*** Print POLST form on 110# Pulsar Pink card stock. ***

 
See additional instructions on the POLST form related to completing and using the form.
 
As additional educational materials are developed for the POLST form and for POLST programs in Pennsylvania, they will be added to this introduction.

In recent years, the Department of Health has actively addressed end-of-life issues affecting Pennsylvanians through study groups and reports.  See:

• End of Life Experiences in Pennsylvania -- A Background paper (May, 2005; PDF, 38 pages); and
• Improving End-of-Life Experiences for Pennsylvanians (2006; PDF, 40 pages) -- Report and Recommendations to the Governor by the Task Force for Quality at the End of Life.

A new POLST form for Pennsylvania was contemplated by the most recent study report, End-of-Life Care in Pennsylvania -- Final Report (2007; PDF, 121 pages), which attached as Appendix "F" the POLST form used in Oregon, which has become standardized nationwide.

The new Pennsylvania POLST form is virtually identical, except for layout and explanations, to the sample form contained in the 2007 Final Report.

Administrative issuance of a POLST form for Pennsylvania was authorized by Act No. 169 of 2006, effective January 29, 2007 (replacement Chapter 54 in the PA Probate, Estates & Fiduciaries Code), pursuant to its Section 5548.

The new POLST form is not the same as an Out-of-Hospital Do Not Resuscitate Order authorized by Chapter 54 of the PA  PEF Code (as explained by the PA Department of Health); nor is it, alone, a Health Care Directive under Chapter 54 of the PEF Code (as explained by the Pennsylvania Medical Society).  See: PA HealthCare DecisionMaking website; "Understanding Living Wills and DNR Orders" posted by the Pennsylvania Patient Safety Authority.  However, a POLST Order could be used in conjunction with both, or either.

End-of-life decision making is a difficult, emotional subject.  On November 8, 2010, an article entitled Facing death: Questions to consider when making medical decisions, by John Luciew, was posted by the Patriot News (Harrisburg, PA).  He addressed this topic using source material from the Pennsylvania Medical Society's Family Health & Wellness website, which had not yet referenced the pending POLST form.

The law and medical privacy rules consider friends and non-married companions less than “real” family.

In order to involve them in one’s own medical decisions, specific legal declarations must be made. These are known as advance health care directives, or simply, advanced directives.

There are two main types: a health care power of attorney and a living will. Most people should consider having both. * * * 

Here are some questions to consider when making advance directives:

• Who would you trust to follow your wishes? Who can make tough choices? Who is willing and able to serve as your health care agent?
• How you would like to be cared for if you can no longer speak for yourself? What life-sustaining treatment and other care you would want at the end of your life?
• What personal wishes and values do you want your health care agent to consider when making decisions about your care?

Perhaps it is the emotional aspects that explain the Department's low-key implementation of the fairly standardized POLST form in Pennsylvania.

Now there is another mechanism through which such medical treatment preferences and directions can be memorialized and then  implemented in Pennsylvania.  It will change the way end-of-life decision making will be conducted.

Updated: 11/19/10:

My friend, Attorney Robert B. Wolf, of Pittsburgh, PA, noted my posting in one of his P&T Hot Tip Emails, which was reposted online by Smithfield Trust Company.

Bob served on the group that prepared the new PA POLST form:

I was privileged to serve on the Patient Life Sustaining Wishes Committee, and to work with leaders in Pennsylvania, such as Dr. Judy Black and Marian Kemp of Highmark and David Barnard, of the University of Pittsburgh in this effort.

He advised further:  "We are currently working on educational materials for healthcare providers, and after that for patients and families."

For a comprehensive list of currently-available POLST resources, see: Resources: Pennsylvania Physician Ordered Life-Sustaining Treatment (POLST), posted by the University of Pittsburgh's Institute on Aging.

End of Life: Concerns & Costs

Last week Elwood Raber, an uncle of my wife and a long-retired science teacher, died at 86 in the Masonic Village in Elizabethtown, Pennsylvania, after his body finally shut down in slow motion, like a clock not wound -- an agony for relatives to witness while recalling active times. The health care providers and hospice servants steadied that process with awareness, knowledge, and connection. In some ways, he was blessed while dying.

Twelve years after publication of a definitive study, with recommendations, by the Institute of Medicine, entitled Approaching Death: Improving Care at the End of Life (12/01/98, 437 pages), there have been many advancements in multi-faceted care provided to those who are dying, and tangentially to their loved ones. You can read the entire report and recommendations online, free. See also: When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (07/25/02), and Describing Death in America: What We Need to Know (04/07/03), both issued by the National Cancer Policy Board.

Florence Wald, once Dean of the School of Nursing at Yale University, started the hospice movement in the United States in 1971, which now has grown to over 3,400 hospice organizations nationwide. See: Hospice founder leaves legacy (11/28/08) by Florence Dethy, published by the Yale Daily News.

Her Alma Mater, Yale University, through its medical, nursing, and theological graduate schools, has offered courses for inter-disciplinary, specialized study about all aspects of dying. See: End-of-Life Care Gets Emphasis in New Yale Curriculum (06/28/08), published in the Yale Bulletin.

The Yale School of Medicine has worked with the Schools of Nursing and Divinity, Yale Religious Ministries, and the Palliative Care Services of Yale-New Haven Hospital to develop an interdisciplinary program that will focus on symptom management, culture and spirituality, and the importance of a multi-disciplinary team approach to patient care. * * *

Still, the issue of cost expended in the treatment of those in a dying process remains largely unaddressed, because traditional medical services to those likely to die remain uncontrolled for the majority of Americans.

The staggering costs of end-of-life medical services were considered in an article originally posted Nov. 22, 2009, and updated on August 6, 2010, by CBS online in conjunction with a 60 Minutes video report (broadcast on Sunday, August 8, 2010), entitled The Cost of Dying: End-of-Life Care Patients' Last Two Months of Life Cost Medicare $50 Billion Last Year; Is There a Better Way?

Last year, Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget for the Department of Homeland Security, or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.

Now you might think this would have been an obvious thing for Congress to address when it passed health care reform, but as we reported last November in the midst of the debate, what use to be a bipartisan issue has become a politically explosive one - a perfect example of the rising costs that threaten to bankrupt the country and how hard it is to rein them in.* * *

The future for many people who face death in hospitals is chilling, and so are the bills left behind:

[I]t costs up to $10,000 a day to maintain someone in the intensive care unit. Some patients remain here for weeks or even months; one has been there for six months.

"This is the way so many Americans die. Something like 18 to 20 percent of Americans spend their last days in an ICU," [Dr. Ira] Byock told Kroft. "And, you know, it's extremely expensive. It's uncomfortable. Many times they have to be sedated so that they don't reflexively pull out a tube, or sometimes their hands are restrained."

"This is not the way most people would want to spend their last days of life. And yet this has become almost the medical last rites for people as they die." * * *

While end-of-life patients are suffering from such therapies, medical resources become directed from progressive healing to simply sustaining, and the patient or relatives may not consider alternatives that may be more "multi-disciplinary" and personal.

After analyzing Medicare records for end-of-life treatment, Fisher is convinced that there is so much waste in the present system that if it were eliminated there would be no need to ration beneficial care to anyone.

Multiple studies have concluded that most patients and their families are not even familiar with end-of-life options and things like living wills, home hospice and pain management.* * *

My friend, Ron Grenoble, a kind, intelligent, and quiet man, had sent the link for this article to me earlier today in an email.

He highlighted one quote, noteworthy for him, and now for me too:

Dr. Byock . . . says "modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily. . . . This is a hard time in human life. But it's just a part of life," Byock said.

"Collectively, as a culture, we really have to acknowledge that we're mortal," he said.

AHLA Session on Advance Care Planning

On April 8, 2009, at 1:00 p.m. EDT, the American Health Lawyers Association will offer a one-hour teleconference, Honoring Our Patients and Capturing Lost Opportunities: The Financial, Legal, and Practical Benefits of Advance Planning, for a fee of $30 (either member or non-member). Materials for the session will be available on April 1st.

This is the description of the call-in session, which is sponsored by AHLA's Public Interest Committee:

Now, more than ever, healthcare providers and patients have an interest in advance directives.

During this period of economic uncertainty, advance planning can offer precious clarity and increased healthcare efficiency, and yet most Americans have not exercised this valuable right.

Public awareness on this subject has increased in recent years, providing the perfect opportunity for providers to encourage their patients to execute an advance directive. * * *

These are the topics to be covered:

• Improvements in the quality of care when the patient's wishes are known.

• The hospital's continuing legal obligation to inform their patients about advance directives.

• The economic benefits of advance directives for the community.

• Tools and methods for communicating with your patients.

Teleconference participants will also receive a DVD of AHLA's just-released educational video, Loving Conversations: One Family's Story About the Importance of Advance Healthcare Planning.

This video will be extremely helpful in facilitating conversations between you and your client or the healthcare provider and her patient.

The DVD provides the viewer with a dramatic look at the difficult decision making process that a family must undergo when a loved one has no advance directive.

By offering the call-in course, AHLA will show support for National Healthcare Decisions Day (NHDD) which will be on Thursday, April 16, 2009. NHDD is an annual effort to encourage patients to express their wishes regarding healthcare, and to encourage providers and healthcare facilities to respect those wishes, whatever they may be.

Presenters include:

• Nathan A. Kottkamp, Esq., Chair, National Healthcare Decisions Day, of McGuireWoods LLP, Richmond, VA

• Lisa D. Vandecavey, of Botsford Health Care Continuum, Farmington Hills, MI

• Thomas W. Coons (Moderator), of Ober/Kaler, Baltimore, MD

Registration information is available online here; and a printed registration form (PDF, which can be faxed) is available here.

Judges and Life-Ending Decisions

On January 23, 2009, an article entitled "Judge May Make Life or Death Decision on Infant" posted by MSNBC, reported that a Texas court "may decide Tuesday whether to end life support for a 6-month-old Dallas baby who has suffered severe brain damage, dozens of bone fractures and numerous scars."

Such decisions regarding elderly persons are less publicized, but more frequent.

In the current Texas case, child abuse is alleged by authorities as the source of the infant patient's dire physical condition:

A court-appointed guardian for the boy has filed a motion in Dallas County juvenile court asking that doctors at Children's Medical Center of Dallas be permitted to remove the boy from life support.

The motion says the parents have not consented to withdrawing the support, but it argues that the move is in his best interests.

His parents * * * were arrested Dec. 23 on charges of injury to a child. Bail was set at $500,000 each and they remain in jail.

"Both parents are responsible for long-term, extensive physical abuse to their only infant son," a Child Protective Services report alleged. * * *

Landmark cases involved previously healthy, younger adults, who suffered an incident that resulted in an irreversible coma, such as Karen Ann Quinlan (1975), Nancy Cruzan (1983), and Terry Schiavo (1990).

Their cases, applicable principles, and legislative developments are carefully considered on the website Court and the End of Life.

Traditionally, death was defined as the total cessation of circulatory and respiratory functions.

In 1968 the Ad Hoc Committee of the Harvard Medical School defined irreversible coma, or brain death, as a new criterion for death.

As medical technology has become increasingly able to maintain patients who would otherwise die from severe injuries or illnesses, the debate about defining death, and about whether patients have the right to choose to die, has intensified.

See also: Advance Directives - A Brief History Of Advance Directives, Living Wills, Importance Of Communication, Additional Instructions In Advance Directives.

The far more frequent and common setting for end-of-life decision making involves terminally-ill or comatose patients who are elderly. In counties with large medical centers, the local courts may, by a review of a surrogate's proposed end-of-life decision, become the decision-maker of last resort for some elderly folks.

On January 26, 2009, The Morning Call (Allentown, PA) published an article by Veronica Torrejón, entitled "Lehigh County judge's panel wrestles with end-of-life decisions" which examined end-of-life decision reviews presented to an Orphan's Court Judge sitting in Lehigh County, Pennsylvania.

Everyone dies, but how and under what circumstances are matters Lehigh County Judge Edward Reibman often finds himself pondering.

Not because he's a particularly morbid man. He has the awesome responsibility of making decisions when a person is incapacitated and there's a dispute over who makes end-of-life choices.

In the absence of a living will, Reibman can decide whether someone lives on a respirator in a hospital room or dies at home with friends.

He wrestles with his decisions, wondering if his rulings reflect his own end-of-life preferences or the little he knows about the wishes of the person he's charged with deciding for.

''I'm sitting there on the bench, I'm supposed to make this decision based on the law, a sound rational decision,'' he said. ''How do I make sure that my own biases don't dictate that decision?'' * * *

To receive general input on end-of-life issues, but not specific cases, the Judge sought out experts and divergent viewpoints.

His search for answers led him to convene a panel earlier this month, a talk that those who attended said probably will be the first of many.

Reibman called together doctors, lawyers, religious leaders and court-appointed guardians, all charged with helping make decisions for others.

They all agreed on one thing -- the right choices are seldom clear.

''The reasonable person standard sounds great, until the rubber hits the road,'' Reibman told more than two dozen assembled at Lehigh Valley Hospital-Cedar Crest to discuss what has become an increasingly complex issue. * * *

The article points out that the number of guardianship cases in Lehigh County is increasing, and that "advancing medical technology and shifting social realities" make end-of-life situations more complex. The conjunction of these two factors in a surrogate decision making setting often places a court in the role of reviewer in individual cases.

Medical prognoses remain crucial evidence in such cases:

Medical advances in just one lifetime have been tremendous, said Dr. Lou Lukas, who heads a program at Lehigh Valley Health Network for managing serious illness. What used to be impossible medically has become the norm and patients are now faced with making decisions about how they will die.

''At almost any time there is something we can do,'' she said. ''Death now results from conscious decisions.'' * * *

Although medical diagnoses are important, so are the personal beliefs once expressed by the patient.

''There are many sources of inspiration that we all turn to,'' Reibman told the panel. For some it is the Torah, others the Bible, the Quran, medical texts or a ''combination of science and scripture.''

The panel's conversation often veered into the personal, with guardians sharing times they wrestled with their conscience on issues such as whether to force a feeding tube on someone who is mentally retarded. * * *

Pennsylvania law, in Chapter 54 of Title 20 ("Health Care") of the Probate, Estates & Fiduciaries Code, effective January, 2007, provides a means whereby any individual can express their wishes as to medical care in advance of a disability, and how decisions should be made by a designated or appointed representative when a patient's capability to make a decision becomes impaired.

For guidance, see: PA HealthCare DecisionMaking website. See also: Decide for Yourself—A Guide to Advance Health Care Directives (PDF), a 12-page brochure posted by the Pennsylvania Medical Society that answers patients' frequently asked questions about end-of-life and other health care planning.

End of life decisions are never easy. But the process can embody respect and the outcome reflect individual preferences if a patient's wishes have been previously-expressed, deliberately.

It is best to do so, while deliberate expression remains a possibility.

“In the long run, we shape our lives, and we shape ourselves.
The process never ends until we die.
And the choices we make are ultimately our own responsibility.”

-- Eleanor Roosevelt, quoted on ThinkExist

Laughing through Cancer

On Friday, January 16, 2009, in the afternoon, the National Public Radio show Fresh Air from WHYY will reprise nationwide an interview first aired on March 12, 2008, entitled For Comedian, Humor Eases 'Toughest Journey' that considers humor as a weapon or a palliative against cancer.

The interview of comedian Robert Schimmel covers extreme topics -- from fun to funerals -- as experienced by "one of Comedy Central's 100 Greatest Comics, [who] had his own stand up specials on HBO and Showtime, and has appeared regularly on Howard Stern and Conan O'Brien."

The circumstances of comedian Robert Schimmel's life are grim: He lost his son to leukemia, married and divorced the same woman three times, and battled cancer.

But throughout it all, Schimmel managed to find strength in humor.

His recent memoir is Cancer on $5 a Day: How Humor Got Me Through the Toughest Journey of My Life.

The book by Robert Schimmel, published February 2008 by Da Capo Lifelong Books (hardcover, 240 pages), is available online at Amazon, Barnes & Noble, and other outlets.

The Cleveland Plain Dealer's review was quoted in Amazon's online review:

A remarkable and riveting account [in which] Schimmel is fiercely candid and direct.

This could be the most profanely adult book of inspiration you'll find.

But inspiring it is, and moving, without being mawkish or phony. Schimmel is simply too laugh-out-loud funny, and his storytelling too compelling. * * *

Another book review posted on Curled Up With a Good Book, by staff writer Barbara Bamberger Scott, described the experiences and attitudes related by the author:

The comic leaves his "audience" howling.

"They need this. They need the distraction, the change of pace, the release." Coaxing laughter out of his medical team and his chemo companions is one side of the story.

But Schimmel still has to walk that lonesome valley by himself. He tries pot, Reiki, and crystal therapy. He talks to a rabbi AND a chaplain. * * *

He has seven sessions of chemo, the last one sufficient to teach him "I'm human," as his immune system crashes.

He has to decide he wants to survive, "which is not easy with cancer-killing poison coursing through my body, my face eternally hovering an inch above the toilet bowl, and my body feeling either as cold as Antarctica or as hot as the surface of the sun."

Visions of his children and his father inspire him. He holds on.

When he's told he's finally in remission, he says to his doctor, "I'm trying to cry but you've been beating the shit out of me for six months and I got no crying left."

Cancer is mean. It requires strong medicine and a strong will. Schimmel got both.

But he also stepped outside the bounds of his own suffering to make others laugh. To make me laugh. And you. * * *

BlogTalk Radio maintains a support group online, Laugh at Cancer Support Community Information, described as "a radio show for those families touched by cancer in any way."

ReachMD, in association with XMRadio, offers commercial educational programs intended for physicians. A few presentations in 2008 relate to the role of humor in the comprehensive setting of cancer treatment.

• Cancer on $5 a Day (Chemo Not Included) - 06/30/2008
• Robert Schimmel on Humor in Surviving Cancer
- 04/28/2008
• The Power of Humor - 04/21/2008
• Eight Chemo Sessions & Life Lessons - 04/07/2008

In addition to the reprised interview of Robert Schimmel on Fresh Air, NPR offers links to prior past discussions, free online, including:

• April 15, 2003 -- Humor Therapy
• Feb. 17, 2000 -- Fighting Breast Cancer With Humor

For those who wish to hear Schimmel's interview [32 min 44 sec], click here, then click the Listen Now icon.

"Attitude is a little thing that makes a big difference."

~Winston Churchill
per Quotations for Cancer Patients, Survivors, and Loved Ones

Executing versus Engaging a HCD

At year's end, I noted many articles recommending execution of a health care directive or a "living will", as an important aspect of personal planning.

Engaging surrogate medical decisions in an end-of-life setting is more difficult than executing a document authorizing it.

The ramifications of a surrogate's medical decision, resulting in a patient's death, can last long and feel lonely.

In "Gwen was very lucky to have a friend like you" published in The Morning Call (Allentown, PA) on January 3, 2009, residual guilt was the subject. Such powerful feelings persisted in a questioner, despite a rational determination and a loving approach, which released a suffering friend consistent with her prior directions.

With permission granted by the columnist, Marc Gellman, I repost the question posed to him by a health care agent who fulfilled her role, but who still suffers anguish.

Gwen was very lucky to have a friend like you

Q: For 15 years, I held medical power of attorney for my best friend, whom I loved and respected. She was very sick for a long time and well aware that her time on earth was short. She even planned her own funeral and had a do not resuscitate order (DNR) in effect.

Many times, my friend stated that she didn't want to be tied to tubes. On one very horrible day, she choked and was taken to the emergency room, where the staff contacted me. When I arrived, the doctor informed me that they had worked on her for a while but couldn't keep her brain functioning and that it would be humane to let her go. I granted permission, and shortly after, she passed away into the arms of God.

Now, for my question ... I've always tried to live a life where you do not hurt another, much less agree that someone should die. For so many years, I fought to keep my friend strong and healthy, and I never gave up on her. Now, my soul is so heavy. I know I respected my friend's wishes, but my heart says I let her down and watched her die -- in essence, I killed her by not doing anything to save her.

Does God see me now as a murderer? How do I balance having medical power of attorney and honoring my friend's wishes with the torment my soul is going through? Most of all, how can I ask God to forgive me for letting her die?

-- Gwen's friend, via e-mail

The columnist's answer relies both on rational arguments and also on religious faith:

A: First, try to remind yourself that for 15 years you kept your friend alive. You helped her achieve a quality of life she would have never been able to achieve without you. At the end of her life, it was simply time for her to go.

It's important for you to understand that your friend was not dying when you received that phone call; she was already gone. Brain death is death, according to all medical and medical ethics guidelines.

Although you may feel like the catalyst to her death, it was God who took your friend, not you. Please let go of the burden on your soul. No one could have had a better friend than you.

The burden you feel now is not a sign of guilt, but rather a sign of love.

The column, entitled The God Squad, is syndicated through Tribune Media Services, 2225 Kenmore Ave., Suite 114, Buffalo, NY 14207. The columnist can be reached at godsquadquestion@aol.com.

Acting as a health care agent is challenging and fulfilling, but also painful for the sensitive person.

Capability to make decisions is one criteria for selection of an agent. Reliability to implement choices based on a patient's personal preferences is another criteria. Ability to accept the consequences of decisions made is a painful final criteria.

Journeys and Journals by Dying Folks

In the movie The Bucket List (2007) "two terminally ill men escape from a cancer ward and head off on a road trip with a wish list of to-dos before they die."

But what if they wanted to do was blog about dying, that is, write a public daily journal about their progress and reactions, good or bad -- what would they say?

One man's statements are found in a Dying Man's Daily Journal, which began on September 26, 2006, with a statement about the author's situation and his intentions:

I am dying, so why am I on the internet telling the world about my problems? After all a lot of people are dying and in a lot worse shape than I am, being in pain or severe discomfort.

I have a bad heart after 4 heart attacks and in congestive heart failure. According to the doctors I could go basically any time. * * *

[It] is my hope that by journaling my experiences, I can maybe help others when they are faced with the same issues. I have prepared myself and right now have no fear. * * *

After more than two years, he was still writing:

I am a 54 year old male and my doctors have told me I am dying. It is my hope that by sharing my experiences, I can encourage others faced with the same situation. I hope to also help the families of those individuals to have an understanding of the process and deal with the fear or dread of being around the dying.

I am not a doctor, not a man of the clergy, I am not a therapist. I am just me, Bill Howdle, I am merely sharing my thoughts and ideas. I write of death and dying, understand this is my personal prospective, based on what I am encountering.

Since Bill began his online journal, his site counter recorded over 170,000 hits, while he soldiers on, surprised.

But neither wild antics nor writing can shield us from suffering and death.

Another man, Leroy Sievers, a blogger, podcaster, & commentator for National Public Radio, made public his fight with cancer, beginning a few months earlier than Bill.

In May 2006, Leroy Sievers began a Morning Edition commentary on his fight with cancer by saying, "My doctors are trying to kill me."

For more than two years since, Sievers contributed a monthly commentary to Morning Edition, wrote the daily "My Cancer" blog on NPR.org and voiced a weekly podcast. * * *

Then one day after his wife, Laurie, noted on Leroy's Blog, "Leroy is planning to be back next week," NPR sadly announced on August 16, 2008: "Leroy Sievers passed away on August 15, 2008, at the age of 53."

I'm so sorry to bring you this news. Leroy passed away last night. It happened very quickly.

You will hear from Laurie later. In the meantime, please let me tell you something all of you already know, how much this blog and all your comments have meant to Leroy. He felt all the affection and good wishes and strength you sent him every day.

He told us that of the many things he had accomplished, he was proudest of My Cancer. The connection he felt with all of you made such a difference in his life. * * *

I had followed his broadcast commentaries. I remember exactly where I was when I heard the announcement of Leroy's death over the radio. I, among millions of others, had lost a long-distance friend, a fellow journeyman.

What is most extraordinary is the continued posting, by Laurie, of almost daily entries on his blog, which now has become his and her "My Cancer" blog.

Instead of contemplating his deteriorating physical illness, she ponders her permeating grief after his death.

Both degeneration and loss rob a person of peace. Yet, in journaling, we can explore pain, distill lessons, form faith, and create healing, if not in the exact way we might have hoped at the outset.

The writing need not be public, but it must be personal to be helpful. And if a journaling writer is strong enough to post thoughts publicly, then others can share and learn too.

It is that desire to teach lessons personally experienced that motivated Professor Randy Pausch, of Carnegie Mellon University, in Pittsburgh, PA, to record a "last lecture," as described by Wikipedia:

He gave his "The Last Lecture" speech on September 18, 2007 at Carnegie Mellon. Pausch conceived the lecture after he learned that his previously known pancreatic cancer was terminal.

The talk was modeled after an ongoing series of lectures where top academics are asked to think deeply about what matters to them, and then give a hypothetical "final talk", with a topic such as "what wisdom would you try to impart to the world if you knew it was your last chance?"

The talk was later released as a book called The Last Lecture, which became a New York Times best-seller. * * *

What would your "Bucket List" include, your blog entries describe, your "Last Lecture" say?

* * *

"It's not about how to achieve your dreams. It's about how to lead your life.
If you lead your life the right way, the karma will take care of itself. The dreams will come to you."
-- Randy Pausch

New PA Laws Affecting Seniors

Recently, PA Governor Edward G. Rendell signed various bills into law that impact long-term care and hospice care in Pennsylvania:

Employees' Overtime in Health Care Facilities:

House Bill 834, PN 3198, enacted as Act 102 of 2008, amends the law commonly known as the "mandatory overtime" law, and establishes the "Prohibition of Excessive Overtime in Health Care Act."

It provides that, except in certain circumstances, a health care facility cannot require an employee to work in excess of an agreed to, predetermined and regularly scheduled shift.

Overtime can be mandated when:

• an unforeseeable emergent circumstance occurs and the assignment of additional hours is a last resort;
  
• the employer has exhausted reasonable efforts to obtain other staffing; and
  
• the employer gives the employee an hour to arrange for child or elder care or care of a disabled family member.

Licensure of Small Residential Hospices:

House Bill 2629, PN 4517, enacted as Act 120 of 2008, amends the Health Care Facilities Act to require that the Department of Health promulgate regulations for the licensure and operation of small residential hospices with 22 or fewer beds.

Distribution of Prescriptions from Veterans Facility:

House Bill 2034, PN 3198, enacted as Act 114 of 2008, amends the "Long-TermCare Patient Access to Pharmaceuticals Act" to allow a pharmacist employed by, or a pharmacy under contract with, a long-term care facility to repackage, re-label and dispense a dose of a drug acquired by a Veteran's Administration hospital to a veteran who is a patient of the long-term care facility

Source: Press Release issued by Governor's Office, "Governor Rendell Signs 31 Bills" (10/09/08).

New "Ask Medicare" Caregiver Tools

On September 18, 2008, the Centers for Medicare & Medicaid Services will launch its new online service offering "information, tools, and materials to assist caregivers in making informed healthcare decisions."

The new resource was announced in a Press Release issued by CMS on September 15, 2008, entitled "Medicare Launches New Caregiving Initiative" posted by MarketWatch, Yahoo, Reuters, InsuranceNewsNet, and other media services.

The Centers for Medicare & Medicaid Services (CMS), along with representatives from partner organizations, will launch a new online Medicare caregiver initiative providing information, tools and materials to help family caregivers.

The effort will be launched with a Webcast where forum participants will take questions from caregivers and highlight personal stories and experiences. * * *

One year ago, I noted that CMS offered other educational resources for caregivers, including Internet links, satellite broadcasts, and online articles. See: PA EE&F Law Blog posting "CMS Offers Caregiving Presentation" (09/18/07).

The new web-based resource center will be launched in a webcast on Thursday, September 18, 2008, from noon to 1:00 p.m. EDT. The presentation will feature:

• Kerry Weems, Acting Administrator, Centers for Medicare & Medicaid Services
• Susan Reinhard, AARP
• Greg Link, Administration on Aging
• Nancy Lewin, Strength for Caring
• Gail Hunt, National Alliance for Caregiving
  

Visit http://www.medicare.gov/caregivers to register for the event or to post questions in advance.

The new online service seeks to educate and to support personal caregivers for ill or aged Americans:

More than 44 million Americans (one out of five) provide daily care for a chronically ill or aging loved one, friend, or neighbor that is valued in economic terms at $350 billion annually, according to AARP.

Because caregiving requires a substantial amount of time, energy, and knowledge, Medicare is launching an online initiative that will provide caregivers with help in making healthcare decisions. * * *

The Ask Medicare website also invites anyone to sign up for various CMS web alerts or newsletters, delivered by email.

• Caregiver eNewsletter
• Dialysis Facility Compare
• Helpful Contacts
• Home Health Compare
• Hospital Compare
• Medicare Eligibility Tool
• Medicare Options Compare
• Medicare Prescription Drug Plan Finder
• Nursing Home Compare
• Participating Physician Directory
• Supplier Directory

As you can see by the check mark in the copied text, I signed in, then signed up for the Caregiver eNewsletter. Try it yourself.