Category: Advance Care Planning

Hospicare 101: It’s All About Living

Posted on by Hospicare

by Jane Baker Segelken, MA, MSW, part of the Social Work team at Hospicare & Palliative Care Services

Many of us are familiar with the statement “hospice isn’t about dying, hospice is about living.” But what does that really mean? When I first became involved with hospice, I quickly realized it’s about quality of life, now and in the future. Hospice is about living the time at the end of our lives with the least amount of pain and discomfort.

For individuals with a terminal illness, hospice — specifically our local Hospicare serving Cortland and Tompkins counties — shifts the emphasis from allowing our medical conditions to dictate how we live to making those decisions on our own and with a team of support. Utilizing a holistic approach that includes the medical director, nurses, aides, social workers, chaplains, and volunteers, Hospicare works to meet the needs of patients and their family and friends.

Correcting Misconceptions

People often may not get the care they need at the end of life because they have a wrong idea about what hospice means. Many of those I knew who became part of the hospice program were slow to get there, in part because they had an impression that didn’t match reality and saw receiving hospice care as giving up. Hospice care is quite the opposite of giving up; it’s all about offering the highest quality of life-giving care as one faces death. Here are some of the facts about hospice care:

  • Your primary care physician and others that offer you care can stay as involved as you want throughout your journey. The staff at Hospicare can serve as principal caregivers or they can support the services you’re receiving elsewhere.
  • Hospice isn’t as expensive as many believe. Rather, many of the costs are covered under Medicare, Medicaid, and most private insurance plans and managed care organizations. No one is ever turned away for inability to pay.
  • You’ll receive hospice services in the setting that is best for you: a private home, hospital, nursing home, or the Hospicare residence on South Hill in the town of Ithaca.
  • There is no limit to how long someone can continue to stay enrolled, although a life expectancy of six months or less is generally required to start hospice services. Although not the norm, there have been cases where someone received hospice services for a year or longer.
  • Family, friends, and caregivers can take advantage of many of the opportunities the Hospicare team provide — hospice services aren’t just for the patient. Friendly volunteers can offer respite to the primary caregivers, and aides can help with errands, cooking, and light housekeeping. Hospicare also provides counseling services, educational programs, and support groups to those who are grieving regardless of whether the deceased received hospice services or not.

When Hospice Might Be The Right Choice

An early referral to hospice — before the situation becomes critical — has so many advantages. The patient and loved ones can take advantage of the many services available including the company of trained volunteers who will do friendly visiting, play music, share hobbies, and offer respite to the caregivers. Signing on early also means that the patient can receive specialized nursing care and medications, medical equipment, and supplies sooner than they might have otherwise. Individuals can self-refer to Hospicare when they’re ready. Anyone can contact Hospicare to begin the referral process; it does not have to begin with a physician.

It’s also important to know that if you change your mind and decide that hospice isn’t the right approach for you at the moment or that you’d like to pursue treatment aimed at curing your disease, you can sign off hospice services. If at a later date you change your mind again, a simple phone call can restart the referral process.

Hospice is About Living

Choosing hospice is a shift from disease maintenance and fighting a health condition to focusing on quality of life. It’s not allowing a medical condition to dictate life choices, but instead putting those choices in your hands. Most of all, choosing hospice means that individuals can live their full rich life until the end — and that they don’t have to die alone, afraid, or in pain.

Choosing hospice is not a death sentence. It is life affirming.

To learn more, call the Hospicare admissions staff at 607-272-0212.

Visit our events page to sign up for this July 19th Hospicare 101 event at Longview and see more upcoming events on this topic and more.

How to Talk to Your Proxy About Your Advanced Care Wishes

Posted on by Hospicare

By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services

Jane Segelken, MA, MSW

One thing that’s important to remember when thinking about advanced care planning is that it’s not just about end of life. In reality, it’s about how you’re living now. It’s about making sure everyone is ready to make decisions on your behalf when you’re unable to communicate — even temporarily while you’re recovering from an accident, surgery, or debilitating illness.

Several years ago, 83-year-old Ella fell and severely broke her shoulder. In the hospital and loaded up on pain medication, the usually cognitively sharp Ella was unable to think clearly. She couldn’t understand the surgical options being presented to her and couldn’t communicate which surgery she preferred. Fortunately, she had talked to her legally appointed health care proxy about many different things including how important quality of life was to her. That information, including knowing something about Ella’s hobbies and interests, allowed her agent to advocate for an extensive surgery that allowed Ella to resume all her activities, including driving. Had the proxy not been informed and kept up to date on Ella’s wishes as they evolved, the proxy might have allowed the physicians to perform a lesser surgery that would have severely limited the very active Ella’s independence.

There is no question conversations about our advanced care wishes are hard. Making decisions about future scenarios isn’t easy. It’s scary for us to think about our own misery and it’s daunting for our proxy to consider our suffering. But the talks are totally worth it. In fact, doing so will minimize our distress and give our agent the confidence they are making the right decisions — some of the hardest he or she will ever have to do.

Once you’ve identified the person you want to represent your wishes — someone who can make difficult decisions, can advocate for you, and who knows your values — it’s time to have “The Talk.”

Talking about your advanced care wishes

There is never the perfect moment to begin the conversation. And it may happen over time — in several conversations rather than one. But a good way to start with the person you’ve selected as your agent is to frame it by saying, “I’d like to talk to you about how I want to live.”

  1. Be direct.
  2. Talk about a situation that someone else, such as a friend or relative, has experienced.
  3. Speak about your values — what makes your life worth living?
  4. Discuss what brings you comfort and joy — your interests, likes, and dislikes.
  5. Talk about what health, sickness, and death mean to you.
  6. Talk about pain. Do you want to be able to communicate while being treated for pain even if it means you might still be uncomfortable? Or would you rather be sedated and pain free?
  7. Consider life support treatments and reveal where your views on them come from. Share under what situations you would want to be on life support — such as a device to help you breathe, nutrition and hydration through a tube, CPR, etc. — and when you might want nothing to be done.
  8. Make sure to address your religious beliefs, if any, regarding healthcare decisions.

Part of this discussion should also address care at the end of your life. Things to consider include:

  1. Do you want a religious or spiritual leader to visit with you?
  2. Do you want music, candles, incense, and dim/bright light in the room? Specify the kind of music you like, the candle/incense aroma, and whether the light should be natural or artificial.
  3. Do you want to know when death is approaching so you can tie up loose ends and say goodbye to friends and family?
  4. Where do you want to die (hospital, hospice residence, at home, other)?
  5. Do you want to donate your organs? Are there any limitations?

As time goes by, especially if your health changes, review your advanced care planning wishes. When you’re young, every 10 years is a good benchmark. As you get older you may want to reevaluate even more frequently. Make sure your proxy, family, close friends, and your doctor know of any changes in your preferences.

Resources

The planning you do now will be a gift to your proxy, to those in your life to whom you matter, and to yourself.

Join Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team on March 15, from 5:30-7 for a webinar, Having the Conversations & Organizing Your Info.  To register email jennifer@crcfl.net or call 607-272-0212.

*Jane Baker Segelken, MA, MSW, is part of the Social Work team at Hospicare & Palliative Care Services.

How Patients’ Wishes Can Guide Medical Decision Making

Posted on by Hospicare

By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services

Jane Segelken, MA, MSW

With the new year upon us, one of the kindest favors we can give the important people in our lives is information on the kind of care we wish to receive if we become ill or incapacitated. Letting them know our care plans and wishes in advance is a true act of love. Doing so takes away some of the burden and stress by allowing them to focus on us without the preoccupation of making decisions we haven’t discussed with them.

For anyone over the age of 18, advanced care planning is the process that allows us to make decisions about our future health care. It is a way of providing guidance for decisions that may have to be made when we are unable to make and/or communicate them on our own. The preferences are noted on legally recognized documents; then the choices are communicated to family/friends and health care providers who are appointed to be the decisionmakers.

While we often think about advanced care planning as part of end of life, there are times when you might be unable to make decisions because you are taking medications that make you fuzzy headed or are in severe pain that prevents you from being able to focus. Regardless of whether you are needing someone to assist in an emergency or at the end of life, having someone who knows your wishes almost guarantees you’ll be treated the way you want. Without these legal documents, decisions about your care may be made by healthcare providers who know nothing about your values.

Medical Decisions: Choosing Your Proxy and Talking About Your Wishes

When thinking about who you will have as your proxy, also known as an agent, it’s important to select someone who will honor your wishes. While many people choose a partner/spouse or child, they may not be the best ones to make the difficult decisions. What is key is that the proxy be able to determine the kind of care you receive based on your wishes not theirs. Others who can act on your behalf include a friend, lawyer, or someone in your social or spiritual community. Also, name an alternate proxy. Be sure to ask the people you want to appoint as your agents in advance to ensure they are comfortable with the process.

Make sure you have a deep, detailed, and honest conversation with your appointed agents about how you want to be cared for in a medical emergency or at the end of life. Talk about your thoughts, beliefs, and values so your agent can make the kind of decisions you would if you were able. It’s also important to talk about your decisions with your loved ones and your physicians so they can partner with your proxy. The Five Wishes and My Living Voice programs are two excellent resources to help guide you through the process.

Medical Decisions: The Documents

  • A Health Care Proxy is a legal document that designates the 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; make sure he or she hears details about your wishes that go beyond what you have written on the proxy form. Keep the original at home; give copy of the completed document to your appointed agent (proxy), your alternate agent, your primary medical providers, and your attorney if you have one. While some people also prepare a Living Will, it’s important to remember that is not a legal document.
  • 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. This form is filled out with and signed by your physician and reviewed at least every 90 days. If you do not have a proxy, the MOLST will guide medical decisions. If you do have a 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.

Resources

If you need help connecting to resources, or ideas for how to start this process, please contact Hospicare & Palliative Care Services at 607-272-0212 with any questions or visit their website at hospicare.org.

*This article originally appeared in the Cortland Standard on January 27, 2022, as the first of a 12 column series devoted to topics relating to hospice and Hospicare called “Let’s Talk Hospice”.

UPCOMING ADVANCED CARE PLANNING EVENT

Having the Conversations & Organizing Your Info
March 15, 5:30 – 7:00 pm via Zoom

For help with advanced care planning, attend Having the Conversations & Organizing Your Info, an upcoming webinar with Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team and hosted by the Cancer Resource Center. For more information about this and other event, visit our event calendar.

The Night You Died – a love story, a poet, and her legacy

Posted on by Hospicare

By Jen Gabriel

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.  

How to Make Death Binder – A Gift to Your Loved Ones

Posted on by Hospicare

What is a Death Binder?

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.

Download our FINDING THE DOCUMENTS YOU NEED worksheet.

Here’s a start to your list:

  • Medical Documents
  • 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. ??

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.

Advance Care Planning Video

Posted on by Hospicare

Please enjoy an excerpt from our webinar series.

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.

End-of-life planning conversations are hard, and now is the time to have them

Posted on by Hospicare

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.  

***  

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. 

***

Talk About it Artwork by Scott Brown.

Advance Directives Communicate Your Wishes at the End of Life

Posted on by Hospicare

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.

Visit Hospicare’s Advance Care Planning web page to learn more.

Save

Talking About Hospice

Posted on by Hospicare

by Dr. Pat Hayes

Talking to an ill loved one about hospice can be hard. It’s awkward and uncomfortable for most of us. We fear offending the other person, or worse, causing them emotional pain. I’ve seen this huge reluctance to even mention the word “hospice” in both family members and in physicians.

But if you have a loved one who is facing a serious or terminal illness, one of the best things you can do is to help them understand the comfort hospice provides. Begin the conversation about hospice early enough so they will be able to take advantage of all the services available. Remember, your loved one is eligible to go on hospice when they have six months or less to live, as determined by a physician.

Even if you’re ready to talk to your loved one about the benefits of hospice, how do you break the ice? That’s a question physicians struggle with, too. As compassionate human beings we don’t want the patient to feel that we’ve given up on them, so we keep waiting for the patient, or their family members, to give us signs that they’re ready for the hospice talk. All too often everyone stays silent. As a result, hospice isn’t even discussed until the last week of life. At that point, the patient is unable to utilize all the services provided by hospice—services they could have had for months!

I don’t have a one-size-fits-all suggestion for how to begin the conversation about hospice, but here are some pointers that can help you choose your own course of action.

If you want to approach the subject of hospice one-on-one with your loved one, choose a quiet, comfortable place without distractions in which to do it. Choose your first words carefully. You might try something like “I want to talk with you about your illness. There may be a time when we may need to focus on your comfort instead of a cure, and I’d like to discuss the options with you.” Or, “Your last stay in the hospital seemed hard on you; I think there’s a way to avoid that in the future.”

These types of openers put emphasis on a future need for hospice. They can give your loved one the reassurance they need to think more clearly about hospice now. After the opener, you can explain more about what hospice is and what it provides.

Another way to approach the topic of hospice with your loved one is to do it in the presence of their doctor. Accompany your loved one to a doctor’s appointment and then use the opportunity to draw the physician into the conversation. A good opening line could be something like “Doctor, what do you think about hospice? Can you tell us something about it?”

In this way, you can begin a conversation some doctors may be uncomfortable initiating. In a three-way conversation, you can facilitate understanding by providing prompts as needed, such as “Doctor, can you tell us more about how hospice will help us avoid hospital visits?” Or you can encourage your loved one to participate in the conversation by asking, “What do you think about what the doctor just said?”

Don’t feel you have to wait for your loved one’s doctor to call hospice. If they live in Tompkins or Cortland Counties, you can call Hospicare, at 607-272-0212, to start the process. Your attempts to help your loved one understand hospice and utilize its services sooner can be a great expression of your love. The comfort and compassion provided by hospice can make a real difference in the quality of life they experience in their last months.

 

Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the January 7, 2017, issue of the Cortland Standard.