Giving the Gift of Life

Giving the Gift of Life Jersey Shore and the NJ Sharing Network hosted its biennial Zan’s Garden of Life ceremony – a tribute to those who have donated their organs and given the gift of life to others. Families and caregivers attended the moving ceremony and visited the garden, where individual bricks honor their loved one’s sacrifice.

This year’s ceremony was especially poignant, as Caroline Duerr, a Neptune High School student who played the violin beautifully at 2013’s Garden of Life ceremony, was honored for her extraordinary gift of life.

A talented musician, Caroline was so impacted by the message she heard, she discussed the power of organ donation with her parents. When Caroline passed in March of 2015, her parents immediately knew what Caroline would have wanted and donated her organs, ultimately giving hope to so many other families. For more information about giving the gift of life, please visit NJSharingNetwork.org.

Watch her touching story here:

Knowing a Patient’s End-of-Life Wishes is Just the Beginning

By Vipul Bhatia, M.D.
Medical Director for Post-Acute Services
WellSpan Health

Advance care planning is not just about old age. At any age, a medical crisis could leave you too ill to make your own health care decisions. Even if you are not sick now, making health care plans for the future is an important step toward making sure you get the medical care you would want, even when doctors and family members are making the decisions for you.

As a doctor and trusted partner in my patients’ health, it’s my job to help them understand why it’s important to think about advance care planning now and inform family members of their decisions. Research shows that patients want their physicians to talk with them about end-of-life decisions.

The depth of conversation required for effective advance care planning differs from patient to patient. For example, the conversation and level of planning with a healthy 18-year-old patient will not be the same as the one with a patient who has chronic illnesses. However, the basic approach can be the same—ask the patient who should make medical decisions in the event of an unexpected accident.

There are various phases in your health that might trigger a conversation about advance care planning. As an adult, you are never too young or too old to discuss your plan.

• Phase 1 – An adult patient at any age who is healthy or has a curable condition
• Phase 2 – A patient with a new, chronic condition diagnosis
• Phase 3 – A patient with progressive, frequent complications
• Phase 4 – A patient who is hospice eligible

Supporting documentation in the absence of a conversation is less valuable compared to a conversation and no documentation. A family may not remember the contents of a signed document, but they will remember words their loved ones have said to them. However, the next step of effective advance care planning is to complete documents such as living wills.

There are many resources for documenting your plan. Just as the conversations about advance care planning fall on a spectrum, some documents are more appropriate than others at various stages of care. A stepwise approach based on your health status and the use of formalized documents will structure advance care planning to better serve you.

But the conversation doesn’t end once you’ve documented your wishes. Make sure you share your documents with your primary care physician and local hospital, if appropriate. Also, share the documents with the family member or friend who will speak for you when you cannot. Make sure they do not have any questions.

Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences. Everyone has a health horizon. You should plan for it.

Vipul Bhatia, M.D., is the Medical Director for Post-Acute Services at WellSpan Health. He is also the director of WellSpan’s Horizon Planning program. Additionally, Dr. Bhatia holds a MBA in Medical Services Management from Johns Hopkins University. Education: Medical School—BJ Medical College, India; Residency—WellSpan York Hospital; Board certified in Internal Medicine.

For more information about WellSpan Health, visit WellSpan.org. To learn more about WellSpan’s Horizon Planning, visit WellSpan.org/HorizonPlanning.

Advance Care Planning is as Fundamental as Family Itself

Advance care planning may sound overwhelming, but the heart of it is a concept as fundamental as family itself.

“You wouldn’t make an important decision about your education, career, finances, relationships, or lifestyle, without thinking carefully about your intentions, available resources and possible outcomes,” explains Linda Farber Post, JD, MA, BSN, Director, Bioethics, Medical Affairs, at Hackensack University Medical Center.

“Life's most important decisions require you to identify your goals, values and preferences, gather information, map out a plan with alternatives, and coordinate with others to make sure your plan turns out the way you intended," she adds.

Your health is no different, according to Farber Post.

“Preparing for health care decisions that might one day be necessary is every bit as important as saving for college, starting a family, or planning for retirement,” Farber Post adds.

Learn more as Linda Farber Post JD, MA, BSN discusses the fundamentals of advance care planning.

The Hardest Decision

"In elementary school, I met a strawberry blonde named Hannah. She was a total spitfire with a constellation of freckles on her cheeks and eyes that reflected her soul – full of life. Our childhoods were bliss. We were little girls as naive as sprouts whose roots were hardly established in the garden of this world."  - Caroline Collins, What No One Tells You About Terminal Cancer

She was born on a Thursday in March. 1999. 

And from that day forward, the world was an open book for Hannah Rose. 

"It seemed as though she had a job to do. Curious from her first moments, her zest for life from a very young age was incredible. As she grew, that spirit never left her. Hannah was an incredible young woman - funny, wicked smart, fiercely loyal." - Our Beautiful Hannah Rose

But at an age when "tough decisions" should be limited to dating, driving and summer jobs, Hannah Rose Duffy found herself facing a set of choices most could hardly fathom.

At 14, Hannah was living with brain cancer - and a rushing onset of decisions that would determine how she and her loved ones would move forward. 

Her determination, you might say, was "Pure Hannah." 

Her decision? A cancer diagnosis was no match for her lifetime of dreams yet to chase, stars yet to follow, and wishes yet to be fulfilled.

Hannah's closest friend and trusted sidekick, Caroline Collins, recalls the day she vowed to carry on the wishes of Hannah Duffy as the legacy of "Hannah the Warrior."

"I laid beside Hannah in that hospital bed. We put together a list of her wishes that evolved into a legacy of our friendship, the beauty of life, and death. That list holds an explanation for why I wore hot pink stilettos to the funeral and why the name “Hannah” will definitely be embroidered on my wedding gown." - Caroline Collins

Hannah passed away on September 26, 2013.  Her story, however, is just beginning.

Read Caroline's blog: What No One Tells You About Terminal Cancer.

Explore the legacy of "Hannah the Warrior" here: The Hannah Duffy Foundation

The Evolution of Advance Care Planning By: Celena Romero

In the summer of 1969 Luis Kutner wrote an article titled Due Process of Euthanasia: The Living Will, A Proposal. The article summarizes the outcomes of several trials involving family members ending the life of an ailing loved one who is suffering from a debilitating, terminal disease. He referred to the acts as “mercy killings.” Kutner, a human rights lawyer, represented society acknowledging that common law was written to treat mercy killings no different than any other acts of murder; however prosecutors, judges, and juries approached mercy killings with sympathy rather than punishment. Given the fact that law does not condone suicide or permit one to assist in suicide, Kutner proposed A Living Will as an alternative solution to relieve great pain and suffering from an incurable fatal disease.

Kutner knew that law honored a patient's right to consent to or to refuse treatment; whether it be an injection or an operation. A patient’s consent must be voluntary and well informed. The Illinois Supreme Court refused to condone the authorization of blood transfusions to a competent adult who had steadfastly refused due to religious beliefs. The problem remains if a patient is unconscious, cannot give consent, or is completely unresponsive, how far should a physician go to preserve life? It was presumed that physicians applied an ordinary means to preserve life but no extraordinary means if the patient was not expected to recover from the comatose state. Ordinary and extraordinary are terms subject to personal interpretation.

Kutner questioned how an individual patient can retain the right of privacy over his or her body if the law clearly prohibits mercy killing, even at the patient's request. On the contrary, the law allows an individual the right to refuse treatment even if it would prolong life. If a doctor does not respect the patient’s refusals, he or she would be subject to liability.

The suggested solution proposed by Kutner is that the individual, while fully in control to express himself or herself, indicate to what extent he or she would consent to treatment. The document indicating such consent may be referred to as A Living Will:

The document would provide that if the individual's bodily state becomes completely vegetative and it is certain that he cannot regain his mental and physical capacities, medical treatment shall cease. A Jehovah's Witness whose religious principles are opposed to blood transfusions could so provide in such a document. A Christian Scientist could, by virtue of such a document, indicate that he does not wish any medical treatment.

Nearly 50 years later, end of life care, shared decision making, informed consent, and advance directives, such as A Living Will remain at the forefront of ethical and legal debate, and public policy. Americans are living longer and are healthier than previous generations but due to advances in medical treatments and technology it is extremely difficult to predetermine the timing of death. Federal policy, state legislature, physician groups, bioethicists, and society at large impact health care decisions. Don’t let them impact yours. Take control of your life decisions regarding medical treatment and end of life wishes. It starts with a conversation. Find out more by visiting yourlifeyourwishes.com.

Reference:
Kutner, Luis (1969) "Due Process of Euthanasia: The Living Will, A Proposal," Indiana Law Journal: Vol. 44: Iss. 4, Article 2

Four Things You Need to Know About Advance Care Planning

By Leon S. Kraybill, M.D.
Lancaster General Health/Penn Medicine

As a geriatrician, I work with individuals to discuss their changing health every day. Discussions of disease, functional changes, clinical decline, and end-of-life care are very common. I routinely encourage people to consider health options, make treatment choices, and share these through discussion and advance care planning documents.

Here are four tips to guide you through the advance care planning process:

Start the conversation. A conversation about advance care planning is about life and how you want to live; not about death. It is a perfect time to express your wishes, identify what is most important to you, and connect to your loved ones. Start your discussion by asking yourself what you value most about life and health, and how you would like to accomplish that.

Advance care planning discussions are for everyone. The choices you make may change during different phases of life, but even young healthy individuals should make choices about their future care.

Just do it! Complete an advance healthcare directive. The right time to complete your advance healthcare directive (healthcare power of attorney and living will) is when you think about it. Don’t wait for the perfect moment, the right words, or a medical change. The advance healthcare directive expresses your wishes and instructions for medical care if you are unable to make decisions for yourself during a terminal change. Click here to download and complete an advance healthcare directive.

Share your advance directive with loved ones, medical providers, and anyone who will help you make future choices. Your wishes cannot be honored if others don’t know about them.

Consider POLST if you have serious health conditions: POLST (Pennsylvania Order for Life-Sustaining Treatment) is a form printed on bright pink paper that allows documentation of your specific wishes for end-of-life care. It guides medical providers and family if you are unable to participate in moment-to-moment decisions. The form is kept near you at all times, usually on your refrigerator or by your bed if you are at home. It should be documented in your electronic medical record. Click here to learn more about POLST.

Through ongoing conversations, your loved ones and healthcare professionals are far more likely to be able to understand the medical treatment you desire, and most importantly, honor your wishes.

Leon S. Kraybill, M.D., is a physician with LG Health Physicians Geriatrics and Chief of Geriatrics for LG Health/Penn Medicine. He also serves as the Medical Director at Mennonite Home Communities in Lancaster and at Luther Acres in Lititz, PA. Education: Medical School—Temple University; Residency—Lancaster General Hospital Family Medicine Residency Program; Fellowship—Lancaster General Hospital Geriatric Fellowship.

Your Life Your Wishes - Hannah's Story

Family: The Heart of Advance Care Planning

Welcome to the "Your Life, Your Wishes" blog.  Join us here regularly as we share testimonials, articles, videos, and important information related to advance care planning.

The Conversation Starts Today

The foundation of advance care planning is, to put it simply, family preparedness in the face of whatever life brings. To be more specific, it's about taking steps today to establish a care plan that suits your needs, values, and preferences tomorrow, and onward.

Communication is the key to advance care planning, and it all starts with a conversation. By taking that first, simple step, you’ll be taking control of what matters most:
Your life. Your wishes. 

Your advance care plan comes down to three easy steps:

• Understand what, and when, certain medical decisions might need to be made
• Consider these decisions ahead of time, and how they may be impacted by your goals, values, and preferences
• Communicate your choices, needs, and wishes with loved ones

By generating a dialogue with loved ones in anticipation of long-term medical decisions, you'll be ready for tomorrow, confident in the future, and boldly at the helm of Your Life, Your Wishes. 

Start the conversation today.