Category: End-of-Life Care

A Movement Prayer

Posted on by Hospicare

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

Posted on by Hospicare

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

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.

How Hospice Helps: One Patient’s Story

Posted on by Hospicare

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

Posted on by admin

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

Posted on by Hospicare

“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.

We Are Doing Profound Work

Posted on by Hospicare

by Lisa Schwartz, RN

The first time I visited Hospicare was during a clinical rotation during my last semester of nursing school. As soon as I walked into the Residence, I knew how special it was and that one day I would work there.Three long years later, after going home to help my parents,then working on the fourth floor at Cayuga Medical Center, I am now a nurse in the Hospicare Residence.

I feel proud to say I work at Hospicare. I haven’t tired of hearing how moved people are by what we do, by the kind of care we give. I believe we are doing profound work in our little six-bed Residence that is really a chapel in disguise.

One night I held a patient’s hand as he died because his wife and daughters were not there. The gratitude they felt that he did not die alone, that someone sat by his side as he left this world, made me weep. I was the one who got the gift. Sitting with him was a privilege.

Sometimes when I am tired or my back hurts, I forget the bigger picture of what we do within the Residence walls. I forget that we have created a place where people come to live as they walk toward the end of their lives. I forget, in those moments, that every day I come to work and tend to my patients is an honor that is almost indescribable to anyone who doesn’t work here.

How can I explain what it means to wash a patient who has died, how the tenderness of it can bring tears to my eyes? How can I describe how holy and sacred this work is? We are there to care for those who are loved and adored and can no longer be at home. They are placed in our hands with trust and the hope that we will do what we do day after day after day. At the end of my shift, I tiredly walk to my car knowing we have all worked hard to make our patients comfortable and to provide a place for them to gently lay their heads,and that we will do it all again tomorrow.

Lisa Schwartz, RN, was a nurse in the Hospicare Residence when she wrote this essay about the rewards of her work with patients and their families.

What Caregivers Can Expect from Hospicare

Posted on by Hospicare

In poll after poll, Americans consistently say they want to die at home. Hospicare, like all hospices, is set up to help our patients do just that. When patients choose to receive our services, they immediately begin to receive care based on the principles of comfort, dignity and choice. This individualized patient- and family-centered care is most often provided in the comfort of the patient’s own home. Yes, it’s true: our board-certified hospice and palliative physicians and fully credentialed interdisciplinary teams of nurses, aides, chaplains, social workers and counselors make house calls! In addition, we arrange for any needed medical equipment such as special beds, wheelchairs, oxygen tanks and nebulizers to be brought to the home so that the patient can be as comfortable as possible.

Knowing that their loved one can remain at home while being cared for by professionals trained in end-of-life care can often ease the minds of the patient’s family members and friends. But there is another piece to the end-of-life care-giving puzzle that is also extremely important: the primary caregiver. While Hospicare team members will visit patients in their homes, those visits are usually an hour at a time, a few times a week. The main caregiving duties still fall to the patient’s primary caregiver, usually a family member.

We will do all we can to assist the primary caregiver. Our social workers and bereavement counselors are available to help with problems the caregiver may be experiencing, including practical problems as well as feelings of grief or inadequacy that can surface during this stressful time. Our nurses will educate caregivers on care and symptom management, and we have a nurse, on call 24-hours a day, seven days a week, to answer questions that may arise. We can also provide trained volunteers to visit with the patient an hour at a time, freeing up caregivers to have some private time for themselves. Many caregivers find that this assistance is a great support to them both physically and mentally.

Sometimes, however, a patient’s needs become too much for the caretaker to handle at home. When that happens, the Nina K. Miller Hospicare Residence is an option for the patient. At the Residence, we provide intensive around-the-clock care in a homelike setting, which can lift the burden of constant responsibility from the caregiver, providing much-needed relief.

Myths and Truths about Pain and Pain Medicine

Posted on by Hospicare

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.

3 Reasons to Choose Hospicare As Soon As You Can

Posted on by Hospicare

November is National Hospice Month when our nation recognizes the importance of professional, compassionate end-of-life care. Patients are eligible for hospice when a doctor has certified they have six months or less to live, yet, more than a third of Hospicare’s patients in 2015 only signed up for service in the last seven days of life.

Here are three reasons why it’s better to call Hospicare as soon as possible, rather than waiting until the last weeks or days of life. Many patients find that they are better able to live life to the fullest once they are receiving

  1. Many patients find that they are better able to live life to the fullest once they are receiving Hospicare’s services. With the assistance of hospice team members, their pain and symptoms often become more manageable, and they can enjoy interactions with loved ones more. Also caregivers and family members find they are able to spend more quality time with their ill loved one. Hospicare follows a holistic,
  2. Hospicare follows a holistic, team-approach to end-of-life care. The team includes a doctor specializing in hospice and palliative care, a primary nurse, an aide, a social worker, a spiritual care professional, a bereavement expert and trained volunteers. In addition, patients and their family have access to on-call nurses 24 hours a day, 7 days a week. Hospicare offers professional support for caregivers. The support of social workers, spiritual care professionals and bereavement experts can be crucial to family members who are struggling to support their ill loved one and process their own grief. Many have told us how their burden eased once they had the support of the
  3. Hospicare offers professional support for caregivers. The support of social workers, spiritual care professionals and bereavement experts can be crucial to family members who are struggling to support their ill loved one and process their own grief. Many have told us how their burden eased once they had the support of the Hospicare team to help them manage their loved one’s illness.