Eileen McDargh and Susan Mullins, daughters of hospice patient Mary Burchard, shared their experiences with Hospice Care of the West on the Channel 6 morning news. This interview is both touching and resourceful for children caring for aging parents. Eileen and Susan delve into how they made the choice for hospice. More specifically, they discuss how Hospice Care of the West had the best philosophy of care that aligned with their wishes to give their mother the most joy and comfort that she could experience on her final journey.

They also talk about how Hospice Care of the West celebrated their mother’s life through recording her life review video interview. Their mother, Mary, reflected on her life as a doctor, a mother and a

pilot in World War II. In the life review, they sang songs with their mother, a favorite family pastime when growing up. This interview is such a resource for any family thinking about hospice for their family member. Check it out.
http://www.youtube.com/watch?v=5iXB1kG2OsE

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Lights, Camera, Action! Yes, we filmed a commercial with a real hospice patient, Arline Perrizo at 95 years old, her daughter, Mary, and her team of “hospice angels” from Hospice Care of the West in Orange County, Calif. Arline is star. Check out the commercial. It’s now airing. Thank you Arline and Mary! Like a real movie star, Arline started the day in hair and make-up with professional stylist and hospice volunteer, Nancy Johnson.

Jay Gianukos, the director of the commercial, filmed Arline in the spotlight. She basked in all of the attention.She then joined me on the film set equipped with lights, video cameras, sound equipment and a crew in her living room. I interviewed Arline, who was an elementary school teacher and by doing this commercial she had a chance to teach one last time. This lesson would take place on a film set instead of her classroom and her students would be our community in need of learning how much hospice benefited her life and her daughter’s. Mary wanted her mother to stay at home but her mother had taken a bad fall that landed her in hospital. When she was discharged, Hospice Care of the West came on to help Mary care for her Mom and provide a safety net of support that has brought them so much relief and peace.

Hospice is a team approach to end-of-life care in the home, or wherever a patient calls home, for the patient with a life expectancy of six months or less to live. Mary and Arline have support from a nurse, social worker, spiritual care counselor, home health aid and volunteer. Read more about hospice care here. Also, the volunteer services at Hospice Care of the West brought Mary and Arlene so much joy. Shannon Sirovy, the director of volunteer services at Hospice Care of the West, had already filmed a life review video of Arlene reminiscing about her life that she can now pass on her wisdom and legacy of memories to her children and grandchildren. The life review video is a gift from Hospice Care of the West created with volunteer hours of a life review interview that is then edited with family pictures and music. Read more about life review video here.

Thank you Arline and Mary for sharing your experiences with us and for other families to learn the benefits to choosing hospice that focuses on comfort care. Many people don’t realize that you have a choice in hospice. And choosing the right team to care for you in the most vulnerable hour is vital to living with peace and comfort even when time is limited. My most favorite moment of the commercial shoot was when Dave Boyle, the spiritual care coordinator, sat down with Arline and Mary. He asked if he could read a passage from the Bible and Arlene agreed. Then he placed his hand gently on Arline’s hand and said, “You can read it with me, if you know it.” And in an instant, a peace fell over the room as Dave read the 23^rd Psalm and Arline joined him. After he asked if she wanted him to pray for her, and she smiled “yes” and sighed relief. I witnessed each of the team members Cheryl, the nurse, Angela, the social worker, Dave and Shannon had such a gift to give and together surround them with everything that they need to make this journey that is often wrenching for families instead be a time of peace, joy and reflection.

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Rabbi Jack Reimer, known as America’s rabbi, wisely advises parents that an ethical will, bequeathing your values, moral assets and life lessons, is just as valuable as a will that passes on your material possessions. He goes on to say in his book, Ethical Wills: A Jewish Modern Treasury, that if parents don’t take the time to share their life stories and the stories of those from whom they come then they will disappear and “our kids will be deprived”.

This custom of an ethical will dates back to Biblical times and existed until the nineteenth century, when people lived their last days in the familiar comforts of home and community. Believe it or not, end of life was a social affair. Philippe Aries, social historian and author of the Western Attitudes Toward Death: From the Middle Ages to the Present notes that this “will was a means for a person to express his deep thoughts; his religious faith; his attachment to his possessions, to the beings he loved, to God and the decisions he had made to assure the salvation of his soul and the repose of his body”. He goes on to point out that this will assured the dying person that his or her life’s wisdom would survive the physical death. The custom reached near extinction in the twentieth century when the place death moved from the come to the hospital, no longer a place that housed the social customs that once accompanied this final stage of life.

With more people edging toward the end of life at home again with the spread of hospice, this social custom is being unwittingly reawakened with the families recording life review videos and life stories that bring about a gathering around the dying person to share the intimate wisdom learned in his life, while expressing hopes and dreams for his children’s and grandchildren’s lives.

Ethical Will Inspiration

The ethical wills have evolved over time the ancient wills encompassed settling of accounts, directives and burial instructions. My favorite passage from ethical will written by Judah Ibn Tibbon to his son, Samuel, in the twelfth-century, is famously quoted in numerous sermons and other inspirational materials. He writes, “Let books be your companions; let bookcases and shelves be your pleasure ground and gardens. Bask in their

paradise, gather their fruit, pluck their roses, enjoy their spices and their myrrh. If your soul be sated and weary, change from garden to garden, from furrow to furrow, from prospect to prospect.”

But, Rabbi Reimer also advises parents that literary excellence or elegant speeches aren’t important because “words that come from the heart enter the heart.” I think these words of wisdom are valuable to parents with terminal illnesses afraid to try their hand at a love letter or sit behind a video camera to speak. At the end of the book, So Your Values Live On: Ethical Wills and How to Prepare Them, Reimer provides a guide to preparing a modern ethical will to be written, audio or video recorded. Some of the topics suggested to inspire parents are:

• “Formative life events and experiences
• The era and world from which I came
• Important life lessons
• Influential people that shaped my life
• Some of my favorite possessions and the stories they contain
• Scriptural passages that guided and inspired me
• The mistakes I’ve made that I hope you don’t repeat
• A true definition of success
• How I feel as I look back over my life
• I ask for your forgiveness…
• How grateful I am to you for…
• And, finally I want you to know I love you.”

Dr. Barry Baines, author of the book Ethical Wills: Putting Your Values on Paper assembled a format that could help organize and inspire writing an ethical will. He suggested writing it in a letter to the family, to your children or your unborn child, or unborn grandchild. He suggested these topics with some excellent guidance on how to express your values with your own words beneath this headings in the will.

• The importance of family and relationships
• Religious/Spirituality
• The Importance of Education, Learning, Knowledge
• Respect For Life
• Learning From Mistakes
• Being Honest, Truthful, Sincere
• Giving and Receiving
• Importance of Humor
• Lessons
• Reflections
• Hopes for the Future
• Conclusions

Words of Poetic Wisdom from Morrie’s Ethical Will

Many Americans are familiar with the book Tuesdays With Morrie: A Young Man, An Old Man, and Life’s Greatest Lessons, but some don’t know the smaller book written by Morrie Schwartz titled Morrie: In His Own Words Life Wisdom From a Remarkable Man. Morrie was 78 years old when he recorded his aphorisms to live and die by in the final months of his life and Paul Solomon, a student of Morrie’s from Brandeis University, transcribed his words. The book is essentially Morrie’s ethical will.

“Let others’ affection, love, concern, interest, admiration, and respect be enough to keep you composed,” Morrie wrote in this book. I share this wisdom as a boost of confidence to those contemplating picking up a pen to write their ethical will or sitting in front of a video camera with family in the culminating hours of life. He goes on to say that on his deathbed visitors came with love and affection often saying “You look luminescent, angelic,” and he’d think to himself “Me, I’m a sick man.” Instead of casting

them away and disregarding how they perceived him, he reeled them in.  “You can’t avoid the bad things coming in physically because they’re inevitable, but you can chose to accept the good things whenever they come along. These loving moments help fortify you and keep you feeling more composed and at peace,” Morrie said. In other words, gather your family and friends, share the stories and exchange affection.

The Abbreviated Oral Ethical Will

I spoke to Dr. Diane Meier, Director of Hertzberg Palliative Care Institute, Mount Sinai School of Medicine, in an interview while researching my book Parting Ways: The New Rituals and Celebrations of Life’s Passing. She said when a person’s final weeks are apparent, she often sits by the bedside and asks some important questions such as “Are there things you feel you ought to accomplish but haven’t been able?” or “Are your affairs in order?” and “Are there people in your family or friends whom you haven’t seen for awhile and would like to see?” She often offers five expressions for patients to meditate on when thinking about important things to say to those they love. These passages are very much an abbreviation of the ethical will.

1. “Thank you for being my father or thank you for being my son.”

2. “Please forgive me for anything that I may have done that caused pain.”

3. “I forgive you for anything that you may have done that caused me pain.”

4. “I love you.”

5. “Good-bye.”

“It’s remarkable how many families take out a piece of paper and write that down when you tell it to them,” Dr. Meier said. “Pretty much every relationship has the components of these things, and it is very helpful for patients to focus on the things that are important while there is still time to address them. And not to have that regret of ‘I never said good-bye or I never told her that I loved her’.”

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End of life in many ways is a journey that you must plan for like any other trip into unknown territory. It’s important to make plans for how you want to spend the time you have left to live. For some people the journey will be months, others weeks, or it maybe even as short as days. Either way, a good plan makes for a better trip that allows you and your family to invite in the kind of memorable moments that happen on a trip into the unknown when you’re not scrambling around lost in fear that stirs chaos and ultimately leads to regret for you and your family members. A good end life plan lights the way in what could be an otherwise dark stage of life.

In most cases, your doctor is the first person to give you some recommendations on which direction to go in and some inclination of what that terrain will look like for you. How each doctor approaches that initial end of life care conversation depends on a number of factors. Often times, doctors are reluctant to give a life-limiting prognosis, often because of their own fears. In reality, when the doctor gives the patient a prognosis, he or she is really giving the patient and the family a “gift”.

Recently, Atul Gawande, a surgeon who wrote an excellent article entitled “Last Days” that unfolded the complexities and costs of end of life care in the New Yorker. And later he spoke at the annual New Yorker conference more specifically about “End of Life Conversations.”  As a surgeon, he admitted that he’d botched these conversations with his patients more than once. In his humility, he decided to ask some of the leading palliative care doctors how they approach these difficult conversations.

As patients and family members, we have to remember doctors are use to figuring out the next step in a treatment plan toward healing, but when there are no more treatments, then comes the end of life conversation. Palliative care doctors have been specially trained to care for patients with terminal illnesses. He spoke to many, but found that Dr. Susan Block, Director of the Dana Farber Cancer Institute at Harvard. She carries a mental list of four questions when going in to talk to a patient about end of life care.

Do you know your prognosis?

What are your fears about what is to come?

What are your goals? Or what would you like to do as time runs short?

What are the tradeoffs you are willing to make for the sake of added time?

These questions help her make the right recommendations for the end of life journey. It’s not about do you want a ventilator, or not, Gawande said, it’s about how you want to live and spend the time you have left?

End-of-Life Agenda

Megory Anderson, the founder of the Sacred Dying Foundation and thelogian who specializes in end of life rituals at University of San Francisco, says that people making plans for the end have a three-tiered agenda. The first is taking care of paperwork associated with bringing closure to your life. The second is reviewing one’s life, making amends with people and saying farewell. The last one is less tangible— getting right with God or preparing to meet God. When you look at this end of life journey through that prism you can see why there is an interdisciplinary team in hospice and palliative care to help you.

The paperwork might begin with a few documents listed below that help you organize

your expectations and ensure your family is prepared with a tangible map that will guide the way.

Living Will

Your living will is a legal document that is used in the medical field to provide doctors and your family with your decisions about life-saving and life-prolonging treatments, i.e. life support like a ventilator or a heart shock, in the event you become incapacitated. In this document you state who is your healthcare proxy to carry out these decisions for you.

The living will is for the medical field.

POLST

Physician Orders for Life Sustaining Treatments

The Physician Orders for Life Sustaining Treatments is a recognized end of life planning document among the healthcare community. The POLST allows healthcare professionals to become aware of the patient’s wishes for care and honor them. The POLST form is a physician order that is representative of the patient’s desires and is instrumental in focusing on the conversation before you become seriously ill. The POLST does not replace the Advance Health Care Directive (AHCD).  ACHD allows you to name a healthcare decision maker if in the future you are unable to communicate your wishes for yourself.

Visit www.capolst.org

Five Wishes

There is a really great resource called The Five Wishes that combines the living will and last wishes into one document that can be ordered online. It’s filled with questions and suggests that help your family and doctor know the following:

•    Who you want to make health care decisions for you when you can’t make them.

•    The kind of medical treatment you want or don’t want.

•    How comfortable you want to be.

•    How you want people to treat you.

•    What you want your loved ones to know.

The End-of-Life Plan

A more informal document is an end-of-life plan for you and your family to prepare for your journey in a similar fashion to a woman who writes a birth plan of how she envisions the birth to go. She writes where she would like to give birth, home or the hospital, the members of her birth team, the interventions she will accept and those she won’t, the people she wants to be present, the music she wants played, the candles she wants lit, the flowers she wants in the room and the list of people she wants contacted with the news. In spending time creating her birth plan, she envisions what she believes will be a peacefully, loving environment for her to give birth.

You also have the right to put together an end-of-life plan that can be verbal or written. It’s good to discuss your expectations, fears and last wishes with your family and caregivers. The end-of-life plan can be a one-sheet or two about how you want your final days to look. You may wish to die at home. You may wish to be surrounded by loved ones. Write a list of those people you wish to accompany you and complete it with contact information. You may want fresh fragrant roses, lilies or irises at the bedside. You may have a specific music playlists of uplifting, comforting music. You may want someone to read you your favorite passages from a Holy Book. You may want a small altar with pictures of your family, or mementoes collected over your life. You may envision a member of the clergy to be present and perform specific end-of-life rituals such as the last rites, or prayers. It’s easier to write down your last wishes to help you feel in control.

There is an excellent kit called Before I Go, You Should Know that you can purchase for $12 from the Funeral Consumers Alliance that can help you ink this plan with signpost type questions and suggestions to point you in the right direction. There will be probing questions followed by blank pages for you to write in your wishes.

Will

The traditional will is a written record of your tangible personal possessions and property accumulated over your lifetime. These valuables are listed and then you direct how you wish distribute them. This can be created with a family law attorney.

Living Trust

The living trust is an excellent tool to protect your family from probate after you pass on. In America after the death, the assets of the estate listed in the will can be tied up in probate court for a year or longer before transferred to your family members. A protective living trust is a legal document that can be created by a family law attorney so that your assets go into a trust and then transfer directly to your beneficiaries when you pass on.

Ethical Will

The Ethical Will is an instrument to guide you in reviewing your life and passing on the more intangible valuables—values, morals and life lessons—gained over a lifetime. These wills date back to Biblical times and are an instrument used to bestow your wisdom on the next generations. In the past, these wills served as reflections of the past, a person’s personal history about influential ancestors and lessons learned in life, while also forward-looking to the future in giving an instructional account of how he wished his children to live on after his death. The ethical will ensured the person nearing the end that his history, the experiences that shaped his values and influenced his spiritual beliefs would live on in the hearts and minds of his children. Some people have a special ceremony where you pass on your oral ethical will to your children.

Location/Storage

It’s recommended that you tell a trusted family member or friend where you will store these important documents, be it a fireproof safe at home, or a safe deposit box at the bank or online.

In the kit Before I Go, You Should Know you’ll find pages that you could list where your wills are stored, the passwords to your email accounts, location and key information for a safe deposit box, the code for your online safe deposit box, your funeral plans and more personal messages such as last words to your family. You don’t necessarily need this booklet/kit but it’s an easy access guide, in lieu of it, you could also create a binder for your end-of-life plan, funeral plan and your other instructional accounts and let a trusted family member of friend know its location.

The Final Plan

The final plans, or more specifically the funeral plans, can be something you deal with a funeral home. Or if you are a member of a faith community often there is someone official that can help you and your family to organize the final plan. Some people like to take care of their own final plan rather than leave it in the hands of their bereaved family. This is personal but if you are going to make your own plans, including the family is often a good idea because the funeral is for the survivors. But certainly having your personal touch, buying your last piece of property on earth and planning your life’s final celebration can be a constructive way to deal with some of the fears that comes from trekking into the unknown. Preparations and choices are the key to diffusing fears of the unknown.  Fortunately, there is a menu of choices for how you want your end of life celebration to look and feel, in fact you can even have a living funeral, a celebration before you pass on. If you know the end is near maybe you want to have a sendoff gathering to say farewell to your family and friends before you go. Either way, you may want to think about the list below to focus your wishes.

Memorial service is a ceremony without the body present. And a funeral has the body present either open or closed casket. So the first question is do you want a memorial service or funeral?

Then of course, where do you want this celebration of your life? It can be any place that represents you.
What kind of theme will best evoke you religious or self –themed?

Do you want a military funeral?

What kind of music do you want played?

Who do you want to give your eulogy? Or do you want it to be an open-mic ceremony?

What flowers do you want to be displayed?

What holy book readings or inspirational poems would you like read?

Do you want to return to the elements by earth or fire? Burial or cremation?

What do you want the post-ceremony party to look like?

At a glance now with these tools in place, you and your family have a clearer vision of where you will go on this journey, it no longer feels so unknown which frees you from some of your fears so that you can focus on spending meaningful time, making lasting memories that celebrate your life.

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