A Report of our Work in Cortland and Tompkins Counties

As we turn the final pages of 2020, our thoughts go to all who have struggled with loss. Whether you mourn the death of a beloved friend or family member – or simply the loss of normalcy — this has been a hard year for so many of us.

At Hospicare, we celebrate the nurses, aides, counselors, social workers, and staff who have tended to those whose end-of-life needs and grief did not take a pause for COVID. They donned masks and gloves and gowns, mastered new technologies and techniques to maintain human connections at a distance, and selflessly braved risks to themselves in order to help a person or family in need. 

The good work undertaken by these extraordinary people could not have happened without donor support. Even in less challenging times, nearly one-fifth of Hospicare’s budget is supported with funds given by a generous community—not for frills, but as a means to provide the level of care, dignity, and comfort that has been the hallmark of our agency for over 36 years. 

When you give, you inspire others to give as well, be those gifts of time, talent or treasure. Together, we are creating a community that we can be proud to call home.

To our donors, we say a special thank you. Thanks to our commitment to patient care and our rich community connections, we stretch every donated dollar as far as it can go.  As Helen Keller once said, “Alone we can do so little; together we can do so much.”

On behalf of all the patients and families we serve, and on behalf of Hospicare’s staff who have not let the challenges of 2020 get in the way, we offer our thanks and gratitude. You make a difference, and our online report is how it shows.

Safe and happy holidays to you and yours,
Joe Mareane
Hospicare Interim Executive Director

Hospice Utilization Climbs in Both of the Counties We Serve

Our lives are largely guided by our values, and as an organization, Hospicare is no exception. One of our core values is excellence, which we define, in part, as a commitment to continuous improvement in everything we do. We expect and remain open to change, recognizing that it is inevitable and necessary for all growth. It’s this value that encourages us to take time to assess and reflect on how we’re doing, and it drives us to improve access to and the quality of our services over time.

Whenever we have the chance, we dive deep into data, which can help provide valuable insights, especially when we can compare other similar organizations to our own.

Recently, metrics were shared with us that showed we are growing in a very important area. A newly released Hospice Analytics report of 2016 Medicare data showed that community members who need our hospice services are more successful in finding and accessing them. The measure, which is referred to as “hospice utilization,” is measured by the percentage of Medicare deaths in each county that occurred on hospice services.

The data told an interesting story, and one that we are proud to share with you.  Across our service area, in both Tompkins and Cortland counties, hospice utilization increased between 2015 and 2016.  Tompkins county hospice utilization increased by 3.7% and Cortland county experienced a growth of 3.6%.

While we’re proud of these statistics, and the community relations and outreach work that no doubt contributed to it, we’re more happy that this growth means that more patients and loved ones gained access to our services.

Bottom line: we’re reaching more families in both of the counties we serve.

At the same time, we will not rest on our laurels.  Excelling in the context of hospice utilization in New York State is a great start, but we can always improve. We wouldn’t be embodying our value of excellence without looking to identify where we still have work to do.

One way we could be doing better is by getting involved with patients earlier, which would help introduce families to our services sooner and would increase the quality of life of patients in their final months. Like most New York hospices, our average length of stay is low compared to the national average. And this is where we need your help!

Help us get the word out so our services to reach the people who need them most. Talk to your friends and family about hospice services and the options they have when facing a life-limiting illness. Read more about why it helps to understand palliative care options before you’re sick. Connect with a staff person at Hospicare directly to discuss a patient – family members, friends, neighbors, and even casual acquaintances can make a referral. Additionally, we welcome the opportunity to speak to your group, large or small, about hospice or palliative care services in Tompkins and Cortland county. Email our outreach and communications manager at communcations@hospicare.org or give us a call at 607-272-0212.

Books Help Grieving Children & Teens

by Laura Ward, LMFT

As part of my work with grieving children and teens, I’m always looking for new ways to talk about grief that feel both safe and interesting. One of the ways to accomplish this is by reading books to children that explain death and grief. Some books, especially those for children, focus on telling a short, but relatable story about loss in its various forms and how it feels to experience this loss. These stories build empathy for self and others in an engaging and concrete way.

Children are concrete thinkers who struggle with understanding the abstract and philosophical questions that surround a death. Stories can help them understand death and grief as a normal part of life.

Books such as Lifetimes by Bryan Mellonie and Robert Ingpen, and The Fall of Freddie the Leaf: A Story for All Ages by Leo Buscaglia, explain death as a natural part of life in the same way that birth is a natural part of life. These books can help reduce fear around the topic of death.

Workbooks, or activity books, provide an avenue for children to open up in counseling in a safe and engaging way. They also provide activities which normalize grief and provide tools for coping with the related emotions and experiences. Amy Barret Lindholm and the children of The Dougy Center for Grieving Children authored After a Death: An Activity Book for Children, which I use with children fairly often.

Helping Teens

Teens can have an especially difficult time with grief. They are in the normal developmental phase of pulling away emotionally from the adults in their lives in order to establish their own identity. This can make it difficult for them to confide in the close adults in their lives. In addition, peers are now the main influence whose opinions matter. It can be difficult for teens to “lose face” by confiding in peers and showing the depth of their emotions openly. In addition, puberty increases the intensity of emotions, but without the benefit of a fully functioning frontal lobe to regulate responses.

Journaling is a great way for teens to process feelings and emotions while grieving and a good skill to have for the future.

Chill & Spill: A Place to Put It Down and Work It Out by Steffanie Lorig  provides a fun alternative to journaling that is specific to teens and their experience. The teen can choose to share some of what they have written with the counselor as a means to build connection.

Straight Talk about Death for Teenagers: How to Cope with Losing Someone You Love by Earl A. Grollman provides answers about what teens might expect in their grief, which doesn’t entail taking advice from the various adults in their life. The book is also brief but informative, which is a plus.

Weird is Normal When Teenagers Grieve by Jenny Lee Wheeler is also informative, but is written by a grieving teen. This is especially useful as grieving teens often feel alone and isolated in their grief from their peers. It goes a long way for teens to feel like there are other people their age who have navigated the strong emotions of grief and found a way through.

Each of these books is on our Hospicare Wish List since we like to have a supply available to hand out to families with young children who have lost a loved one or who have a family member receiving hospice services. Part of our work at Hospicare is to help patients’ families prepare for and understand what’s happening with their loved ones. Books like the ones listed here are important tools to help the youngest family members understand what’s happening.

 

Laura Ward is a bereavement counselor at Hospicare. She also organizes our Good Grief program to support grieving children and their parents/guardians.

Join Us for Spring Volunteer Training

Would you like to volunteer with Hospicare? We depend on over 100 volunteer community members to help our agency carry out our work. Our trained volunteers visit patients in their homes or assisted care facilities, offering practical help and companionship. They also assist the agency in other ways, depending on their interests and backgrounds.

What do volunteers get out of volunteering for our agency? Volunteer Kat Patton says her work with Hospicare gives her a chance to learn and grow as she gets to know the patients she helps. “As a volunteer you meet remarkable people who happen to be at the end of their lives,” she says. “There’s a lot of joy and wonderful connections to be made. I meet people who have done amazing things. I didn’t know them back then, but I can still hear about it now and see the twinkle in their eyes when they talk about their experiences.”

Spring volunteer training will be held for three consecutive weeks: March 14, 16, 22, 23, 29 & 30, 5:30 PM-9:00 PM. The trainings will take place at the Nina K. Miller Hospicare Center, 172 East King Road, Ithaca. Attendance at all sessions is required.

Before registering for training, prospective volunteers must submit an application form, available on line and meet with Wendy Yettru, manager of volunteer services for an informal interview.

For further information, check out the volunteers section on our website or email Wendy or call 607-272-0212.

Five Steps for Advance Care Planning

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.

  1. 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.
    • A Medical Power of Attorney or Health Care Proxy, allows you to designate someone you trust to make health care decisions for you if you become incapacitated.
    • 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.
  2. 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.
  3. 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.
  4. Put your choices in writing on the New York State Health Care Proxy and Living Will forms. You can download copies of these forms here.
  5. 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.

Myths and Truths about Pain and Pain Medicine

by Eric Lessinger, MD

As Medical Director of Hospicare & Palliative Care Services, I spent a considerable amount of time addressing issues related to pain and its treatment. Some people have deeply-held beliefs about pain medication which have little or no basis in reality, but which interfere with their willingness to take the drugs that will provide needed relief.

Myth: One person can judge another person’s pain by observation.

Truth: What people say about their pain is the best way to know how much and what kind of pain they have. Some people with severe acute pain and many people with chronic (constant) pain may not show any signs of pain.

Myth: The use of strong medications for pain can lead to addiction.

Truth: Addiction begins as a psychological phenomenon. It is extremely rare for a person to become addicted to narcotics if the medication is being used to treat pain, and the person was not addicted before.

Myth: People taking narcotic medications can’t function well.

Truth: Moderate to severe pain itself often interferes with psychological and physical function. People getting adequate relief of pain through use of narcotic medication commonly think more clearly and function better physically than they did before taking the medication. Side effects of narcotics commonly do include sedation, nausea, and constipation. However, with chronic use, sedation and nausea almost always resolve, leaving only constipation as a side effect which does require ongoing treatment.

Myth: People taking narcotics become dependent and can never stop.

Truth: If the source of the pain is eliminated, a person can safely taper off. On the other hand, with chronic use, it is true that a person’s physical system can become dependent upon narcotics, meaning that abrupt withdrawal of medication can lead to an uncomfortable withdrawal syndrome. This is very different from psychological addiction, and withdrawal syndrome can easily be avoided by tapering off the medication instead of stopping it abruptly.

Myth: Morphine and other narcotics are useful only for treating pain.

Truth: Narcotics are quite effective in treating shortness of breath. As more and more people with chronic lung disease and chronic congestive heart failure reach a terminal phase of their illness, morphine and other narcotics provide welcome relief from episodic shortness of breath, without worsening the underlying condition.

Myth: Morphine is only used when you are dying, and brings death sooner.

Truth: Morphine (and other narcotic or opioid pain relievers, including codeine, oxycodone, hydrocodone, hydromorphone, fentanyl, and methadone) can be used to treat moderate to severe pain from any cause, when less potent pain relievers such as aspirin, ibuprofen, naproxen, and acetaminophen are not adequate. Morphine is often given to relieve pain in patients who are near death, and in such cases it is just as likely to lengthen life (by allowing the patient to relax and live comfortably) as it is to shorten life (by decreasing alertness and thus decreasing intake of fluids). Generally at that very last stage of life, getting comfortable and staying comfortable to the end become the main goals of the patient, and narcotic medications are very useful in helping the patient meet those goals.

If you have questions about pain and symptom management, talk to your physician or call Hospicare & Palliative Services at 607-272-0212.


Dr. Eric Lessinger was the medical director at Hospicare for 12 years until his retirement in 2014.