End-of-Life During a Pandemic; Norma Helsper Made the Best of it.

By Jennifer Gabriel

From the moment Norma Helsper moved into the Hospicare residence, staff knew they were greeting someone special. Phones rang off the hook with dozens of friends asking about visitor restrictions, and whether it would be okay to drop off flowers or her favorite custard. “Norma’s got spunk and you’re going to love having her there,” one caller told me. 

So maybe I shouldn’t have been surprised when I walked into her room for the first time.

Norma is perched in her recliner, carefully studying her absentee ballot for the New York primary election.  

“You’re voting!” I say. 

“Of course I’m voting!” she exclaims. “Of COURSE! This is an important year. Too important to miss.” 

Norma folds her ballot and places it on her table, as I settle onto the edge of her bed. Norma’s mom is sitting across from us, answering a cell phone that never stops ringing.  Because of Hospicare’s COVID-19 restrictions allowing only one visitor in the room at a time, Norma’s sister sits outside, waiting for her turn. 

“It’s awful,” Norma says when I asked about her experience in facing end-of-life in a pandemic. “This makes it so hard for me to see my friends, though I’m grateful that one can be here at a time. I know that’s not true in so many other places.” 

Thirty-three years ago, Norma moved from her childhood hometown outside Chicago to the Finger Lakes. She had accepted her dream job in the Spanish department at SUNY-Cortland, where she quickly became close with her colleagues. The tight-knit group of friends are many of Norma’s callers and visitors these days, and they show up in ways both big and small.  Luscious bouquets of flowers fill every surface in Norma’s room, and greeting cards cover her bulletin board. 

As we chat, Norma points to a wilted flower arrangement on a table behind me, and kindly asks if I can remove it.  No sooner is it gone and she is back on the phone. “Good news!” she tells a friend. “There’s room for more flowers! Bring some anytime!” 

Norma and her husband first settled in Cortland, and eventually moved to Ithaca, where they bought a home in Fall Creek. “Oh wow — the Halloweens in Fall Creek!” she chuckles, referring to the hundreds and hundreds of families that flock to the neighborhood every year for candy and community. “That night is something, isn’t it?” 

Norma is easy to talk to and quick to crack a smile, so I understand why people gravitate towards her.  One of those people – a friend named Mary — is the reason Norma came to know about Hospicare. 

“Mary was a wonderful, wonderful friend,” Norma explains. “One day, she called me up and said, ‘Norma, there’s no easy way to say this: I have lung cancer’.” 

Eventually, Mary moved into the Hospicare residence. 

“I remember it was room 3 because that one has the larger deck,” Norma recalls. “And one day we had a little soiree there with a whole bunch of friends. We really had the nicest afternoon. It was such a nice moment, and a truly great memory of Hospicare.” 

In the years that followed, Norma continued to support Hospicare, raising money for the agency as a swimmer for Women Swimmin’ for Hospicare.  

Surgery and treatments kept Norma’s ovarian cancer at bay for several years, but this spring, it became obvious that Hospicare is where she needs to be.  “The people that take care of us are amazing,” she says. “The rooms are comfy. The birds are beautiful. The grounds are beautiful.” 

Norma’s days are filled with friends calling her phone, trips through the Hospicare’s gardens, and visits with her good friends from SUNY-Cortland and her church, the First Unitarian Society of Ithaca.

Twice now, three of her talented friends have come by to play music for Norma to enjoy – since they aren’t able to be in the residence together, they pull up a picnic table and sing to her from below her porch window. 

That’s also where the minister from the Unitarian Church planted 16 colorful flamingos in the grass, to give Norma a laugh. 

Norma remains upbeat, but this hasn’t been an easy road.  Norma’s husband needs round-the-clock care and lives in a nursing home. The couple has not been able to get together, not even virtually, since he doesn’t know how to work the technology. “It’s very hard,” Norma tells me. “It’s what we both had to do and it was the right decision. I know that. But it’s still hard.” 

Norma’s only daughter lives in a group home some 45 miles away. Restrictions there mean no residents are allowed to leave – the staff made a special exception for Norma, so she was able to see her once so far. But of course, that’s not enough. 

And then there’s her 92-year old mother, Betty, who traveled from the Chicago area to be with her daughter for a week. She hopes to return soon, but traveling is difficult at her age, and she isn’t sure when she’ll be able to make the trip. 

I ask if I can take a photo of them together. “Of course,” Norma says with a smile. Betty is a little more reluctant, quietly admitting that she hadn’t taken a single photo of Norma since she moved to Hospicare.  

Betty pulls out her phone and swipes to find a picture from last fall, when Norma’s cheeks were full and her body stronger.  “Isn’t she beautiful?  Just so beautiful.” 

Norma encourages her mom to take the photo with her, and Betty moves carefully to Norma’s side.   

“This isn’t what is supposed to happen,” Betty says to Norma, once the photo has been taken and she’s settling back into her chair. “I’m supposed to go before you.”  

Her voice quivers. “This really isn’t what is supposed to happen. It’s just not.”  

“I know, sweetheart,” Norma replies softly.  

They lock eyes. 

 “I know.” 

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.

Our Hospice Angel

Post by Gail VanPatten

When we heard the news of Bill’s condition it felt like my world was coming to a complete end…Life had no meaning…I kept asking, “Why?” We had so many plans for the future and now to be told this.

Hospice was brought up and explained to me how Bill could be at home with his family and not be in a hospital. We were also told that there would be someone to help us, just a phone call away whenever we needed it, even if our family needed it. Our Hospice nurse came often to check on Bill’s condition and would show us what had to be done and how to make him comfortable.  She explained how to handle certain situations that might arise as it became closer to the end.

Hospice encouraged me to talk to him about what he wanted me to do with our farm and the people I should contact. This was something I needed to know.

Our nurse came at a moments notice if I needed her. She would arrive when tears were streaming down our faces and would have us smiling and talking about the good times all of us shared and memories we would never forget.  She was our “Special Angel” and someone I trusted and who would listen when we really needed to talk.

Even when Bill was in a coma she told us to talk to him and tell stories that were important to us.  Our nurse said he could hear us and I truly believe he did.

I never thought twice about calling in the middle of the night if there was a turn for the worse and if I was scared that I might do something wrong.

One of the hardest things I ever did in my life, that our Hospice nurse was very emphatic about telling me, was to let him know that I was going to be okay.  Only hours after I did that, Bill died that night.

At that point I called Hospice and they came and took care of everything.

I wish everyone in our community would think about having Hospice if they have a love one in the final stages of life. The nurses and volunteers are there for you. To be at home with your family and things around you that you love is so important.

Shortly after the funeral Hospice contacted me to see how I was doing and suggested a volunteer would be in touch me that I could talk to.  I did go out to dinner with her and after that she kept in touch with me.

I am so thankful for the doctor that put me in touch with Hospice at the time when our family needed it the most.  As a board member of the Hospice Foundation of Cortland County, and as a family member of someone on service, I realize how important Hospice is and what wonderful things are being done.

Gail VanPatten served on the Board of the Hopsice Foundation of Cortland County. She wants everyone to know about the help and comfort that is available to them through Hospicare. She is pictured here, on the far right, with current members of the Hospice Foundation of Cortland County.

What the Dying Need from Us

by Dr. Pat Hayes

It’s not easy to know how to relate to someone who is dying. Do we express our own sadness at the situation? Do we pretend nothing is wrong? Is it appropriate to tell jokes and act silly like we used to do with our loved one? Should we visit more often to show our support or visit less often so as not to tire them out? And what about our own fear and discomfort? Do we give in to those feelings and keep our distance?

These are questions everyone struggles with. I recently saw a helpful article by the American Hospice Foundation that offered suggestions about how to support someone at the end of life. Their list was based on what the dying themselves had requested.

Here are the requests of dying people that struck me especially strongly:

  • Be honest with me. I can tell when your feelings or actions are insincere.
  • Laugh with me; cry with me. Allow me to express intense emotions.
  • Don’t feel sorry for me. Your understanding helps preserve my dignity and pride.
  • Touch me. I want to be accepted despite the way I may look. Inside, I’m still the same person you always knew.
  • Let me talk about my illness if I want to. Talking helps me work through my feelings.
  • Let me be silent if I want to. Sometimes I don’t have much energy and I just may want your silent companionship. Your presence alone can be comforting.
  • Space your visits and calls. Consistent support is very helpful.
  • Offer to help me with simple chores. Routine jobs are often difficult to accomplish.
  • Continue to be my friend. Don’t let my illness overshadow all the good times we’ve shared together. I know this is hard for you too.

I noticed in all these requests that the emphasis is on companionship and understanding. In my own experience with the dying I have seen that it is very important to them to have loved ones to interact with. When you’re supporting a dying loved one, you don’t have to have deep conversations to show your love. Those kinds of conversations are great if they happen, but if they don’t, it’s OK, too. The dying just want to be included in the everyday world of the living and not isolated.

When my own mother was dying, my siblings and I spent much time with her. We would take turns sitting by her bedside, and we would talk amongst ourselves about everyday things. She would listen and join in occasionally. Sometimes she would doze and then wake up to our conversation again. There was an inclusiveness to my mother’s last days, a continuing of the life we had always shared with her. It is a memory I cherish.

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 September 2, 2017, issue of the Cortland Standard.

A Movement Prayer

By Mimi Quillin

When I was at Boston Conservatory of Music majoring in dance, a group of us visited a hospice and performed for the people living there.  More than three decades of performing later and it is still one of my most memorable experiences.

The performance – a Christmas show – started.  Lacking a proper stage we danced in a big room with our audience in wheel chairs surrounding us.  Every way I turned there was a new face watching me.  Knowing that our audience was terminally ill made me cautious about how to approach them. They looked so delicate, propped up in their wheelchairs, with their heads covered in scarves to keep the cold from their heads.   I wondered if I needed to alter my presentation in some way to make them more comfortable. I was terrified, but I kept dancing and smiling and pretending that my audience was perfectly healthy.  As my nerves calmed down I began to see the looks of sheer joy on their faces.  I don’t know how to describe it without sounding trite.  Maybe it’s just one of those things that you have to experience to understand.  I was only 20 years old and I couldn’t imagine what it might be like to be dying.  I definitely didn’t think it included smiling or expressions of joy.  It was my first experience of understanding of the power of dance to communicate.  I had spent an awful lot of time working at becoming a dancer and a lot of that time is solitary.  It’s self-driven because let’s face it – no one else cares if you can point your feet or jump high or how many pirouettes you can do except you! And all that work was now giving something to someone else.  And much to my surprise, it was giving something to me, too!   I took a giant step forward feeling the responsibility and power flowing through me.   It was different from my parents or my teachers applauding me. I now had power to make contact and to bring joy.

Years later when I wasn’t getting much work because of hitting middle age – and that is bad news for a dancer (especially a female dancer) – I decided to seek out that experience again. I took a job as an artist in residence at Calvary Hospice in New York City.  I went there wanting to relive that strong connection to an audience that gave me so much power.  I honestly didn’t take the job for altruistic reasons, as much as I would like to pretend I did. I was looking for something. I knew that I was needed there. It was that simple.

Dancing is not at the top of the activities list in a hospice, but I discovered that every single person I came into contact with had a relationship to dancing.  I led a large group in dancing, I danced with patients in their rooms, I talked about dance with a dying dancer, I talked to a man who met his wife dancing to Artie Shaw before Artie Shaw became famous!  I remember one patient especially— Mr. Lettman.  He wasn’t actually ready to be in the hospice yet but he had no where else to go and he was seriously ill with prostate cancer.  He had been a New York cab driver since immigrating there from the Bahamas.  Knowing he could no longer walk, I began our time together by suggesting that he could move as much as he wanted to right there in his bed.  It made sense to him and he really missed moving.  I put on a CD of the song “Wade in the Water” and prepared to lead him in some movement.  Well….Mr. Lettman showed me!  He closed his eyes and he started by putting his palms together in a prayer.  As he expanded his movements I realized I was witnessing a movement prayer.  One of the nurses entered during his dance and she stopped and watched with me.  She looked surprised but the joy in his body was contagious and she began to smile and nod to me.  We both knew it was a very precious and special moment to behold.  The music ended and Mr. Lettman opened his eyes and smiled at me and said, “Thank you.”  I thanked him back.  I believe that was some of the most authentic dance I have ever had the privilege to see.  I was included in his prayer.

My play, Dégagé (disengage), was born of my journal record of experiences like the one I had with Mr. Lettman.  I grew to care very deeply about many of the people at Calvary. And I learned to care the moment I met them because very often they were not there when I returned. They were on a bridge and had already started their journey.

The residents of Calvary allowed me in to the most private of moments in life – their death.  And when I sat with them or moved with them people often told me all about themselves.  I suspect if we had met under other circumstances that they might not have been so open,  but when it’s your time, you want to be remembered.

It was an honor to be here with them.  Dégagé (disengage) seeks to honor every single one of them.

 

Mimi Quillin is a performer, choreographer and writer. Her original play, Dégagé (disengage) will have its world premiere at the Hangar Theatre July 20-29, 2017. Visit the Hangar’s website to learn more and to purchase tickets.

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Most of Us Want to Die at Home

by Dr. Pat Hayes

Home is where my heart is. When I’m home, I’m comfortable. I get satisfaction out of sitting in my favorite chair, looking out the window at my backyard, even eating off the plates my wife picked out. I imagine if I were dealing with a terminal illness, little things like that would matter even more. Recent polls show that approximately 80 percent of Americans want to die at home, and I imagine their reasons are similar to mine.

But the statistics show that most Americans don’t actually die at home. In fact, only 20 percent have the privilege of taking their last breath in the comfort and familiarity of their home. There’s a big difference between what we want and what actually happens.

As a doctor, I saw patients and families wrestle with this dilemma. Often the patient ended up in the hospital, sometimes multiple times in the course of the illness, and the family and medical staff did all they could to keep the patient alive even past the point where curative treatments were an option. That frequently meant longer hospital stays and more extreme measures that made it difficult or impossible for the patient to return to their own home.

It doesn’t have to be this way. If you want to die at home, begin telling your loved ones about this desire as early as possible—even before you have a life-threatening medical condition. The more you talk about your wishes, the more your loved ones will understand the importance you place on it. And there’s something else you can do—something that can have the greatest influence on whether you die at home or not. If you or your loved one should have a life-threatening illness, consider calling in hospice as soon as you are able. (Remember, Medicare and most insurance policies will pay for hospice once a physician has determined the patient has six months or less to live.) In Tompkins and Cortland Counties that means calling Hospicare.

Like all hospices, Hospicare uses a team approach. Along with a doctor whose specialty is end-of-life care, they provide specially trained nurses, home health aides, spiritual care experts, bereavement counselors and other healthcare experts. All of these highly trained professionals are focused on keeping the patient comfortable and helping their family members cope with this highly stressful situation. They not only know how to care for people in their own homes, they are dedicated to helping patients die there if that’s what the patient wants.

They are also experts at pain and symptom control. I’ve seen patients’ comfort improve considerably once they’re receiving hospice services. I’ve also seen their family members breathe sighs of relief as hospice team members ease the burden of care. Looking back on my patients who died at home, I can’t remember any situation where that decision turned out to be the wrong one.

Hospicare has a motto I always find uplifting: “It’s about how you live.” Dying at home surrounded by the people and things we love is one way to celebrate life all the way until the very end.

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 February 4, 2017, issue of the Cortland Standard.

 

Talking About Hospice

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.

How Hospice Helps: One Patient’s Story

by Pauline Cameron, RN, CHPN

Pauline
Pauline Cameron, RN, CHPN

I worked with a patient who was in his late 30’s and had been diagnosed with an aggressive form of colon cancer. At the time of his referral to hospice, we had been told that his pain was not well-controlled. On my arrival at his home, the patient was lying on the sofa. I explained the 0-10 scale for rating pain and asked him to give me a number; through gritted teeth, he said, “Nine.”  And it was clear what our first priority had to be…

We quickly got his pain down to “6,” at which point he was able to engage in conversation and looked much more relaxed. Over the next several days we visited him twice a day and worked with his MD to adjust the doses of four different drugs, as he actually had multiple kinds of pain – a narcotic, a neuropathic med (for nerve pain), a steroid, and an NSAID (e.g. ibuprofen) for bone pain.

One day I walked in and, as usual, found him lying on the sofa.  I said, “OK, you know the drill – what’s the number today?” He gave me a big smile and, making a circle with his thumb and index finger, said “Zero.”

Yes, that patient died, and that was sad. But before he died he got up from that sofa and took his children to visit Marineland and took them fishing and went to visit his parents once more. He really lived until he died. Excellent pain management gave him back what was left of his life.


Pauline Cameron, RN, CHPN was a Hospicare staff member for many years until her retirement in 2014.

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Families More Satisfied when Hospice is Involved

Founder of the modern hospice movement, Dame Cicely Saunders once said “How people die remains in the memory of those who live on.” At Hospicare, we recognize the great importance behind Dr. Saunders’ words. Our goal in caring for our patients and supporting their families is for death to be a peaceful, natural experience and not something to be feared.

Reuters reports that a recent study by the Journal of Clinical Oncology (online on December 19, 2016) found that families of cancer patients were more satisfied with the treatment and care their loved ones received if hospice was involved. The families surveyed for the study were more likely to indicate that their loved ones had the right amount of pain medicine and help with breathing difficulties when they had care and support from hospice.

Hospice is generally defined as being appropriate for people whose physician indicates they have less than six months to live. Unfortunately, many patients and families wait until much closer to the end to ask for our help.  “Our findings suggest that earlier hospice enrollment is associated with better symptom management, less pain, better quality of care, and a higher likelihood that patients will receive the care that they want in their own environment,” said study co-author Dr. Alexi Wright of Harvard Medical School and Dana-Farber Cancer Institute in Boston.

If you want to learn more about the benefits of receiving hospice care, or palliative care, please visit the Get Support section of our website. Or call us at 607-272-0212.

Choosing Hospice Sooner Brings More Comfort at the End of Life

“I wish we’d called you sooner.” This is something we hear often at Hospicare from patients and their loved ones. Once a doctor has certified that a patient has six months or less to live, the patient is eligible to go on hospice, but all too often, our hospice team isn’t called in until the last few days of the patient’s life. Our nurses, social workers, aides and other professionals do all they can to make those last moments as comfortable as possible—but there is so much more they can do if they have more time to get to know the patient and family members.

The longer a Hospicare team works with a patient the more they are able to respond to that person’s unique situation and medical needs. Here are some of the benefits of choosing hospice sooner:

  • As patients and family members work with the Hospicare team, they become more comfortable sharing their end-of-life journey and discussing their care needs. This rapport can help in the building of an optimal care plan based on the patient’s and family’s wishes.
  • Pain and symptoms can be controlled better. Our hospice team members are specially trained in the treatment of pain and discomfort. That includes the mental and emotional distress that can come at the end of life. Pain and symptoms are addressed sooner and crises can be avoided.
  • Stressful hospital visits can be reduced or eliminated.
  • Hospicare team members can help family members understand the end-of-life process. The team social worker, spiritual care coordinator, and bereavement counselor in particular can help family members become more mentally and emotionally prepared for the death of their loved one, which can make the grieving process less overwhelming.