It was a sunny spring afternoon and an unassuming envelope arrived in Hospicare’s mailbox. Inside, a generous check and a single piece of paper.
“To whom it may concern,” the letter began. “Enclosed please find my final donation. I have a terminal illness and will not be further donating to any organizations. Sincerely, Joyce McAlllister.”
Joyce’s friend and caregiver, Erin Quinn, said that this effort was Joyce’s way of saying goodbye to the dozens of nonprofit organizations she had supported.
“Joyce had a soft spot in her heart for nonprofits of all kinds,” Erin explained. “She made small gifts to them her whole life, and when it came time to prepare for her death, she wanted to be sure that her favorite charities knew why her giving would soon stop.”
In addition to supporting Hospicare and a handful of other local organizations, Joyce made gifts to many animal rescue organizations.
“Joyce always said, ‘everyone always cares about the elephants and the big cats, but no one ever thinks about the donkeys’,” Erin said, with a chuckle. “She loved her donkeys.”
Born in Ithaca in 1931, Joyce and her family lived on dairy farms in Groton, and later in Dryden. She graduated with an Ithaca College degree in drama, left the area to live in New York City for a few years, and returned to the Ithaca-area in 1960. It was then that Joyce began a 30-year career at Cornell University.
Joyce’s strong connection and affinity for Hospicare began in 2004, when the agency cared for her husband John, first at home, and then at the residence.
“Hospicare did everything right by Joyce,” Erin said. “She felt so supported and cared for, and that meant everything to her.”
After she retired, Joyce turned to poetry writing. She published her first book of poems at the age of 85. In fact, it was her 2004 experience with Hospicare that inspired her poem, “The Night You Died.” The poem expresses Joyce’s gratitude for the Hospicare nurse who had sung her husband’s favorite Irish tune with him in the moments before he died.
A copy of that special poem is below. Joyce’s third book of poetry, published posthumously, will be available for purchase later this year.
The Night You Died
Afterwards, they told me how you sang your way to death, head raised high to catch your ever-thinning breath, singing melodies you learned in youth, forming words you watched parade across closed lids.
The Night Pat Murphy Died sounded from your bed, moved out the door, down the hall; your soul followed with a will, anxious now to find that spot of green you knew from birth was yours to claim.
They said your voice was resolute and unafraid, an Irish tenor making song to spend the leap from finished life to timeless death. Beside a stone in County Cork, ancestors perched and waited.
A death binder is a place to gather necessary information and documents that detail how we want our wishes carried out, our belongings dispersed, our finances dealt with, etc.
A homemade Death Binder puts all your important documents in one place.
Why make a death binder?
Reasons include:
It’s a gift to our loved ones: reduces the stress for our families when confronted with difficult medical decisions or in the event of our death
Provides a concrete plan for our family to follow; no surprises
Provides the opportunity for family and friends to provide a loving presence at your bedside and emotional support for one another
A gift to ourselves: a chance for us to review our lives and even make changes
Provides the opportunity for us to have difficult conversation with our family, hopefully alleviating charged conversations later
Provides the opportunity for family to become closer
STEP ONE – Set your Intention
Set the intention and ask your self the hard questions about your life and your choices.
How do you imagine your end-of-life experience?
What medical or life-sustaining care do you want?
Who are the family and friends who will be most impacted by your death?
What do you want your legacy to be?
STEP TWO – Gather your Documents
Gather important information and documents that we want to be readily available in case of natural disaster, medical emergency, or death.
Social security card and other identification like birth certificates and passports
Utility and other monthly billing information
Mortgage, deed, or lease for your home or residence
Vehicle title
Internet account numbers and passwords, including subscriptions and email accounts
Important phone numbers for family members, your lawyer, doctor, and financial planner, pastor or priest, and your preferred funeral home. ??
A document like “5 Wishes” can help you think about medical, emotional and spiritual questions, providing a structure for you to reflect on these issues and start the conversation with your health care proxy, other medical providers, and your family.
STEP THREE – Organize your Documents
Decide what would work best for you. You can put documents in a binder, file cabinet, or box. If you make your own so that you can customize it to be an expression of you and your values. Or you can purchase one on the internet or at a local book store.
Poke around and see what makes the most sense for you!
This homemade Death Binder includes handwritten tabs for organizing documents.
There are several premade options on the internet. Such as printables, fill as you go workbooks, and books.
STEP FOUR – Have the Conversations
The next step is to talk to your loved ones and let them know what you are doing and why it’s important.
Although end-of-life planning is critical for adults at every age, it can be difficult to find a way to introduce the topic of conversation to your loved ones.
Possible conversation starters:
There’s been something on my mind and now is a good time to bring it up
You can count on me to be there for you
I want to do the right things for you when you need them the most
I don’t know your wishes so please tell me them so I can honor them whether I agree with them or not
You matter to me and I care about you
Remember, a Death Binder is a living document and should be updated regularly. We live in a death phobic culture and it can be difficult to prioritize getting our affairs in order, it is a gift to yourself and your loved ones.
Please don’t hesitate to reach out if you have any questions. Email us or call 607-272-0212.
The webinar series was a partnership between Hospicare & Palliative Care Services, the Bem Endowment at Hospicare, and the Ithaca College Gerontology Institute.
With additional support from the Community Foundation of Tompkins County, the Funeral Consumer Alliance of the Finger Lakes, the Cancer Resource Center, and the Cortland Free Library.
Hospicare uses an interdisciplinary team approach to providing care to patients, families and caregivers in Tompkins and Cortland counties. We provide emotional, medical and spiritual support, and patients have access to care from physicians, nurses, social workers, grief counselors, home health aides and volunteers. It’s never too early to ask questions.
If you have any questions about Advance Care Planning, don’t hesitate to reach out at info@hospicare.org or 607-272-0212.
by Lucia Jander, M.D., Medical Director at Hospicare & Palliative Care Services
End-of-life. Dying. Death. These words make people so uncomfortable that they often soften them. We talk about loved ones who “passed away,” or “lost a battle,” or “went to heaven.”
There are many reasons to view COVID-19 as a dark time for our community and our world. It is. If there is a silver lining to a pandemic, it is that it makes people confront their own mortality, to think about their wishes, and – I hope – to become a little more comfortable with death as a part of life. This is a good time to open the door to those conversations with loved ones.
In hospice, every patient and family works with staff to develop a personalized care plan. Each patient shares with us their preferences for physical, emotional, social, and spiritual care. Some patients may desire music therapy; others may want help making amends with their family. Just as every person is unique, there is no “one size fits all” approach to end-of-life care.
How do you imagine your end-of-life experience? What medical or life-sustaining care do you want? Who are the family and friends who will be most impacted by your death? What do you want your legacy to be?
You don’t need to be sick or in crisis to have these conversations. My advice to my patients is to start with yourself. Spend time thinking about your desires, and what you want to articulate to your loved ones. Think of this process as creating peace of mind for yourself and a gift to the people who love you most.
Once you have your own thoughts together, here are some resources to get started:
Having the Conversation
Although end-of-life planning is critical for adults at every age, it can be difficult to find a way to introduce the topic of conversation to your loved ones.
Try to remember that by having the dialogue, you are doing your loved ones a favor because they won’t have to guess your wishes.
A Living Will is a legal document, that you can provide to your loved ones and your health care proxy to explain your decisions about your end of life. A document like “5 Wishes” can help you think about medical, emotional and spiritual questions, providing a structure for you to reflect on these issues and start the conversation with your health care proxy, other medical providers, and your family.
Medical Decisions
A Health Care Proxy is a legal document designates a person who will make health care decisions only if you are unable to make them yourself. Because it is difficult to know all the choices that will need to be made, it is important to appoint someone you trust and who knows your core values. Be sure that every one of your medical providers has a copy of this proxy, keep a copy at home, and send a copy to your attorney, if you have one. It’s also a good idea to think about naming an alternate proxy, in the event your primary proxy can’t perform their duties; make sure both individuals are unified around you and your expressed desires.
A Medical Orders for Life Sustaining Treatment (MOLST) form outlines your wishes for the end of life in the event you cannot make this decision yourself. If you do not have a Health Care Proxy, this document will guide medical decisions. If you do have a Health Care Proxy, this document can guide their choices on your behalf.
A Do Not Resuscitate Order (DNR) determines what life sustaining measures, if any, you would like if your heart has stopped beating and you are not breathing. While a DNR can stand alone, it is also a part of the more comprehensive MOLST form.
Financial Decisions
A Durable Power of Attorney names someone to make financial decisions when you can no longer do so. If finances are complicated or there are exceptions to the use of your money, this document can be drawn up by a lawyer.
A will indicates how your assets and estate will be distributed upon death. The person you name within your will as the executor is responsible for ensuring your wishes are met. Your will may also specify arrangements for care of minors, gifts to loved ones or favorite charities, and funeral and/or burial arrangements
A living trust provides instructions about the person’s estate and appoints someone, called the trustee, to hold title to property and funds for the beneficiaries. A living trust can provide a detailed plan for property disposition.
Other Considerations
If you’d like to be an organ donor, you can fill out an organ donation card and carry it in your wallet. In New York State, you can also have this choice listed on your driver’s license by contacting the DMV.
Put together important documents and information so that they are easy to access in a time of stress or uncertainty. Among items to consider putting together in a safe place, ideally in a fireproof box:
bank account numbers, both checking and savings
insurance policies
investment account details
safe deposit box keys
Social security card and other identification like birth certificates and passports
Utility and other monthly billing information
mortgage, deed, or lease for your home or residence
vehicle title
Internet account numbers and passwords, including subscriptions and email accounts
Important phone numbers for family members, your lawyer, doctor, and financial planner, pastor or priest, and your preferred funeral home.
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Dying is not something we can – or should soften. Death is a part of life, and planning for it can make all the difference to the emotional health of those you leave behind.
If you need help connecting to resources, or ideas for how to start this process for yourself, please contact us at Hospicare. We are here to support residents of Cortland and Tompkins counties, and we speak to individuals and groups about the importance of end-of-life planning. Our goal is always to make your wishes are expressed and respected, so email info@hospicare.org or call 607-272-0212 with any questions.
by Suzanne Carreiro, LMSW, Hospicare Social Worker
One of my jobs as a hospice social worker is to help our patients and their families think about and complete advance directives. Advance directives provide a road map to future healthcare and are important documents everyone should have. They can include a healthcare proxy (someone you designate to make decisions about your healthcare if you are incapacitated); a living will (guidelines about the type of care you want or do not want); and a Medical Orders for Life Sustaining Treatment (MOLST) form (a document signed by your doctor outlining the type of care you want and who can make decisions for you).
Talking about advance directives and long-term healthcare wishes can be difficult, especially if the first discussion is at a time when a loved one is seriously ill or dying. I encourage you to talk regularly with your loved ones about the type of care you’d want so they aren’t left struggling to guess your wishes. The other important step is completing the advance directive forms.
But how do you make the important decisions necessary to fill out these forms? The following are some suggestions you may find helpful as you think about your own advance directives.
Figure out what’s most important to you. What do you value about your life, your health and how you live? How much medical care are you generally comfortable with? Would you want everything possible medically to be done for you? Would that change if you were diagnosed with a terminal disease? Knowing how you think about healthcare and life is the first step in being able to articulate your wishes for your own health.
Decide who you want to speak for you. If you’re unable to speak for yourself, who do you trust to make healthcare decisions for you? For some people, this is their spouse or adult child. I know one woman who chose a close friend to be her healthcare proxy because she didn’t believe her family members would abide by the type of care she would want. I’ve had patients who chose a sibling or adult child because they didn’t want to burden their spouse with making tough decisions at what would be a very emotionally difficult time.
A healthcare proxy is more important than a living will. For most adults, having someone you trust as your healthcare proxy matters more than having a detailed living will. The living will forms might encourage you to try to imagine every possible medical scenario, but things rarely happen the way they were imagined. It’s more important to speak to your designated healthcare proxy (and other family members and close friends) about your general philosophy of care.
Talk to your primary care physician about a MOLST form. (In some states this form is called POLST or physician’s orders). Most of us don’t need a MOLST form yet, but for people who are getting older or who have been diagnosed with a serious illness, the MOLST form replaces the living will. Since MOLST forms are signed by your doctor, they are actual medical orders.
Review and revisit your advance directives periodically. As your health or life circumstances change, you should review, and perhaps revise, your advance directives. At a minimum, we recommend reviewing your advance directives when you have a birthday and your new age ends in 5 or 0; when you’re diagnosed with a serious or chronic illness; if you get divorced or married; or when someone close to you dies. To revise your living will or healthcare proxy, complete new forms and have them witnessed, write “revoke” on your old forms or destroy them, and give updated copies of the forms to your healthcare proxy, your physician, your local hospital and anyone else who has a copy of the previous forms. If you have a MOLST form, your doctor is required to review it with you periodically, especially if you move, have a change in health status or change your mind about care. You need to hold onto the originals of the forms and keep them somewhere they can be easily located if needed.
There are no right or wrong answers. Go back to the first item in this list. Who are you as an individual and what do you value? Each of us have our own wants and needs. Your healthcare wishes don’t need to match anyone else’s wants and needs, they just need to be right for you at this time.
Advance directives are something every adult should complete and discuss with their loved ones. You don’t need a social worker or medical professional to complete these forms; you can do it on your own. In most situations, in New York State, to complete the living will and health care proxy forms you only need two people to sign as witnesses.
Advance care directives are directions you give to your loved ones and medical professionals outlining your healthcare wishes in the event you are unable to articulate them yourself. If you haven’t yet shared your advance care wishes, follow these five steps to ensure your healthcare choices and desires are communicated to those who will make decisions for you if you are incapacitated.
Learn about the most common forms of advance care directives.
A living will gives you the power to designate what types of health care intervention you want or don’t want should you become incapacitated and unable to state your wishes at the time of your healthcare crisis.
In addition, in New York State, a MOLST, or Medical Orders for Life Sustaining Treatment, complements other advanced directives. It lays out specific medical orders that apply as soon as you consent to the orders and a physician signs the document.
Talk about your health care wishes with your family, friends and doctor. Although you may think that your loved ones and physician know what you would want if you were incapacitated or unable to speak for yourself, that is not necessarily the case. You can ease their minds as well as your own by speaking frankly with them about what types of treatment you would or wouldn’t want. It also helps to give them a general idea of where you fit into the healthcare continuum between those who wish to be allowed to die without medical intervention and those who want every possible medical intervention to be tried all the way until the very end.
Select a person to speak for you in the event you are unable to speak for yourself. This person, called a healthcare proxy, can be a family member or a friend—or someone else you trust understands your wishes and will make decisions in line with them.
Make copies of your advance directives and give them to your decision maker and your doctor. Keep the original documents in a safe and accessible place, and tell others where you put them.
