Wednesday, April 12, 2017

POLST: The Actionable Solution to a Universal Question

By: Amy Frieman, M.D.
Hospice and Palliative Medicine

Most of us won’t find it surprising that studies show the vast majority of Americans would prefer to die in their own home, with friends and family by their side, than at a care facility.

When juxtaposed with recent data from the Centers for Disease Control, however, these findings illuminate the sobering reality of the current state of end-of-life care: Although 70% of Americans say they would rather die at home, in actuality, 70% of Americans die in a hospital, nursing home, or assisted-living facility.

Reconciling patients’ care wants/wishes and the reality of care received is part of the rationale behind Practitioner Orders for Life-Sustaining Treatment (POLST), a medical order form that empowers individuals to work closely with their medical team to detail their personal goals and medical preferences when facing a serious illness. 

“It’s a way of honoring the wishes of both the patient who wants the most aggressive interventional treatment to prolong life, AND the patient who wants to spend their last days focused on comfort at home with loved ones,” says Amy Frieman, M.D., Medical Director, Palliative Care, Legacy Meridian Health;  Clinical Assistant Professor, Rutgers and RWJ.

By translating wishes expressed in an advance directive into actionable medical orders, POLST allows patients with serious chronic illness, terminal illness, or those who are elderly and frail to dictate the way that they want to live their remaining days. 

“For physicians, POLST offers an actionable approach for managing the fragile balance between ‘quality’ of life and ‘quantity’ of life,” says Dr. Frieman.  “For patients, it provides an attainable, clinical solution to a universal question: ‘How do you want to live out the rest of your life?’ ”

Thursday, March 30, 2017

Health Care Proxy

By: Celena Romero
Clinical Quality Specialist
Lehigh Valley Health Network

It is very easy to get caught up in day-to-day routine activities. Rarely is there time to think about the “what if” questions until it’s too late. I’m specifically referring to advance care planning. I’d like to share my personal experience that triggered my thoughts of advance care planning at 35 years old.

My husband and I were healthy newlyweds taking our ordinary life for granted until my husband became critically ill with the Swine flu and MRSA pneumonia. Suddenly, I was making health care decisions and signing consent forms on his behalf, as he remained intubated in a medically induced coma. I asked myself, “If we weren’t married who would be making his healthcare decisions? Would it be my husband’s parents; his 18 year old son? Who would these decisions be legally deferred to? Would I be left in the dark as far as his medical care or prognosis?” Fortunately, my husband made a full recovery and is doing exceptionally well thanks to the care he received at Lehigh Valley Health Network. But, I still wonder what things would have been like if we weren’t married during those crucial moments in the intensive care unit.

I also question, “What if I were the one in a coma? Is my husband comfortable making medical decisions on my behalf?” As it turns out, he’s not best suited for the task. I defer my healthcare decision making to my mom. My mom is my health care proxy. Everyone over 18 years old needs a health care proxy - a person who knows your care wishes and will express them to doctors in the event you cannot speak for yourself. This is an example of advance care planning.

The Conversation Project's user friendly guide, How to Choose a Health Care Proxy and How to Be a Health Care Proxy offers facts and tips to make sound decisions about choosing, and being, a health care proxy. This guide can found at http://theconversationproject.org/wp-content/uploads/2017/03/ConversationProject-ProxyKit-English.pdf. For more information about advance care planning, please visit http://yourlifeyourwishes.com/.

Monday, October 24, 2016

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:

Tuesday, October 4, 2016

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.

Thursday, September 8, 2016

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.

Monday, July 25, 2016

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, 2013Her 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