Talking to Loved Ones about End-of-Life Choices

By: Vipul Bhatia, M.D.

Medical Director, Post-Acute Services
WellSpan Health

Advance care planning often starts with a tough conversation. This talk can be difficult for just about anyone. None of us want to consider the likelihood of death, yet a health crisis can come at any time. Following certain steps can make the task of discussing your wishes less daunting. Having the conversation with your loved ones before a crisis can reduce the stress and anguish that could occur if your wishes are not known when a crisis happens.

One tip is to get a head start when you are healthy; advance care planning is not just about old age. A medical crisis can occur at any time, which could leave you unable to make your own health care decisions. If you start this process early, your primary decision will be to identify the person who will make decisions for you if you are unable to make decisions for yourself. The next step is to make sure that person is aware of what you value by discussing your end-of-life wishes.

Once you have identified the key family member or friend who will be your health care proxy, or the person who will hold your durable power of attorney for health care, a bit of preparation on your part can help make the conversation easier. For those of us who find it difficult to broach this topic with loved ones, preparation would include identifying what truly matters to you. You may want to explore why you are thinking about these topics in the first place. Is this due to a particular event in your life or that of someone close to you? Perhaps a car accident or a sudden diagnosis of cancer? What else motivated you to have these discussions and conversations now?

If you can answer these questions, you may be better prepared to have this discussion with loved ones. You might also explore your basic principles and values and how they would still apply near the end of your life. It’s important to keep in mind that the first conversation on end-of-life issues may be the start of a learning process and could continue with more conversations throughout life.

If you have this difficult conversation when you are healthy, it may make the process easier as you age. With advanced age, you may find yourself developing new medical conditions or that your functional ability has declined. As this happens, it is important to revisit your choices and decisions. This self-reflection will help to identify anything that has changed since the last time you talked to your loved one. If that is the case, you should approach your loved one again to explain what led you to change your decisions and choices.

The conversations that can be held with family or closest friends ahead of death can allow you, at any age, to fulfill your five wishes:

1. To be represented by the person you want to make health care decisions if you can’t.

2. To be clear on whether extreme measures should be taken, what life support means and how pain should be managed.

3. To know how comfortable you want to be when you near death.

4. To know how you want people to treat you, including if you wish to die at home.

5. To have the opportunity to share important stories with loved ones; this also includes after-death arrangements that can be clearly expressed before death occurs.

As a physician, I can tell you it is often difficult for health care team members to talk with patients about these issues. However, if our patients give us permission to talk about end-of-life choices, it becomes easier for us–as your trusted health care partners–to guide you through the process. So, once you have done your preparation and have spoken to a loved one, please take the next step and talk with your health care team members.

No one knows your preferences and values better than you do. Your health care team members can help guide you in that decision-making process with key information about your health, but they cannot make decisions for you. With that in mind, the more you share with your health care team about what you value and how you prefer to be treated during the end of your life, the better they will understand your advance care planning wishes.

Everyone has a health horizon, so let’s plan for it. By taking these steps and starting conversations early, you will ensure that your care in the future will be exactly how you planned. More importantly, you will diminish the chances of moral and personal distress that your loved ones could face when making decisions for you. Talk to your loved ones now about your end-of-life wishes. You and your family will be glad you did.

More resources are available at www.yourlifeyourwishes.com.

Vipul Bhatia, M.D. is the medical director for Post-Acute Services at WellSpan Health, and director of WellSpan’s Horizon Planning initiative.

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?’ ”

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/.

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