Good Tidings We Bring
Finding Hospice
Coming through Hospice & Palliative Care of Northeastern Illinois’ front door is a welcoming moment in a person’s life. For those facing needs that require a level of expertise unique to hospice and palliative care, or if a visitor just wishes to stop by with some questions about the services available, this compassionate nonprofit looks forward to doing all it can to improve the quality of our lives.
A handful of local citizens envisioned a hospice and began that dream with a few loyal volunteers. Their vision grew through a timeline of two and a half decades into what is known today as Hospice & Palliative Care of Northeastern Illinois (HPNI) – a nationally recognized healthcare organization.
These visionaries were years ahead of hospice and palliative care being recognized, as it has in recent years, as an official medical specialty. HPNI, along with other hospice and palliative care providers across the nation, has gained acceptance for medical coverage by the United States Department of Health and Human Services’ Centers for Medicare and Medicaid Services.
The certification by Medicare and accreditation by the Joint Commission of this Barrington-based nonprofit healthcare organization, and its recent relocation to a new building that is a freestanding 16-bed inpatient home and main offices, have made the dream come true.
Yet, there’s still one thing left to be done. And that’s to get the word out … that HPNI is here and ready to serve the entire community, providing education about hospice and to improve our quality of life through services of compassionate medical, palliative and bereavement care.
We plan ahead (often in great detail) for most every important chapter of our lives – education, careers, financial security and healthcare. And before we are old enough to do that planning for ourselves, we have parents to determine our best choices for a safe and good journey ahead.
Yet the final chapter in an overwhelming majority of American lives still hangs in an uncertain balance – as many people are unaware of the available options for assuring a quality of life to the very end. Or, they find out about the quality of life support and services offered by hospice and palliative care – but, much too late. The HPNI staff so often hear, “if we only knew about the services and support … things would have been different.”
A clear view of hospice
The word “hospice” is challenged with a limiting connotation – it evokes thoughts of death and dying. Some think of a hospice as that “place” where one goes to die. However, talk with any of the professionals who call HPNI their “home away from home,” and they will explain that hospice is a philosophy about how to improve the experience of end of life, for the person facing their last days and for those who love them. Ask families who have had loved ones in the care of hospice, and their relief and gratitude is a message they will share. For many families, integrating hospice or palliative care early – whether in advanced directive planning for future decisions, or months before a life-limiting illness has taken its toll – significantly reduces what can become a chaotic and panic-stricken experience for both the patient, and those around them.
Hospice care is a medical specialty that is appropriate during the last stages of life for an individual who has a life expectancy of six months or less. There is a decision to be made during this stage as to when an illness or condition is no longer responding to modern, research-based medical treatments, or when those treatments are negatively impacting quality of life. This decision is ideally made well in advance of a person’s final chapter, yet when a person’s health changes unexpectedly or quickly, HPNI is positioned to help with a personalized care team. They are experts in end of life care.
“Hospice is a philosophy that allows for nature to take its course while we are able to help maintain a person’s dignity and comfort along the way,” Daneen Gorski-Adams, the Director of Hospice Home Clinical Care said. “The role of our interdisciplinary hospice team is not to lead you, and we don’t follow you; rather, we walk beside you to provide resources that you need to achieve your goals,” she said. “Our goal is not to try to stop the end of life – but to provide tools for comfort.” Gorski-Adams added that nationwide statistics show that people in the care of hospice live longer than if not receiving its care.
Gorski-Adams understands the challenge our society has to embrace this topic. “If we could look at each other and talk candidly about the end of life, we would be ready for anything…even a situation where someone was in an automobile accident,” she said. “We must have the conversation. Given the chance, death could be as beautiful an experience as birth. The question is, “what is your goal?”
There are also important misconceptions that Gorski-Adams wants to clear up. “People do not come to hospice to die,” she said. “We do not enhance or speed up the dying process, and our goal with long-term care patients, such as those who visit us from a nursing home, is to help them return to their nursing home as quickly as possible.”
What is palliative care?
Palliative care has recently been accepted as a medical specialty that addresses ongoing pain and symptom management. Patients who are eligible for and benefit from palliative care are those with a serious illness such as cancer, kidney disease, or congestive heart failure. HPNI has palliative care physicians who are board certified in this specialty.
A person for whom palliative care is appropriate may not be in an end of life stage, but has pain management needs that go beyond what traditional medicine can offer. The role of the specialists on HPNI’s Palliative Care Team is to work with a patient’s primary care physician to help manage pain and symptoms. This focused team approach offers someone who is suffering an advocate for their needs in what can be a complicated healthcare system.
Pediatric palliative care at HPNI is the program of choice for many regional hospitals and pediatricians. “At any given time, we are treating 50 children,” said Carrie Alani, the Director of Pediatric Services. “About 39 of those children are in their home, and the rest are in a long-term care setting. These children and their families face extraordinary challenges with illnesses such as brain tumors, birth defects, genetic syndromes and birth trauma; our youngest is 8 days old and our oldest is 23,” she said. The pediatric program’s number of referrals continues to climb. “No matter where a family is in life, we try to bring hope, comfort and a peaceful transition,” she said. (See sidebar on page 110.)
The end of life conversation
No one wants to talk about the end of life – their own – or that of someone else that they care about. Yet, when faced with the end of life journey, there can be physical pain, emotional pain, and many decisions to be made during a stressful time. And what about the wishes of the person facing their final chapter? What do they want, or what would they want had they been in a position to share that information with family members?
Dr. Michael Marschke, the chief medical officer at HPNI, says that there are a few rules to think of in end of life discussions. An effort to include more palliative care helps to empower someone coping with a life-limiting illness, and he said that national trends are beginning to create laws and initiatives to encourage the end of life conversation. Additionally, he recommends that people pursue advanced care directives, which is a process that documents end of life decisions well before they are realized. Having an advanced directive opens and facilitates the process for people to have their end of life wishes to be met.
Marschke said. “One hundred years ago, we used to treat death like the natural experience that it is. Hospice care allows us to return to how doctors used to approach this topic a century ago…yet with the added advantage of the tools of modern medicine,” he said.
Our society is death-defying and we all want to live forever. Modern medicine has found ways to prolong life and few if any want to let go when their time to go has arrived. Physicians are also in a difficult decision to tell a patient or his family that there is nothing else that can be done to stop a disease or life-limiting illness. “In my experience, between 60 and 80 percent of doctors are referring people to hospice, and in the state of California, it is required by law,” Marschke said.
It can be difficult for families to advocate for their terminally ill loved ones, as they are so used to following the advice of their family doctors. Hospice staff can be of great assistance in helping families to advocate for their loved ones while also maintaining communication and coordinated efforts with family doctors.
Marschke sees his new role at HPNI as his dream job. “I’ve been involved in hospice work for 19 years and felt this was my calling. There is a different level of quality care when the hospice is nonprofit,” he said of HPNI. “Few nonprofits have a hospice home like we do, and one that is state of the art. We are trying to do our part to be a big part of the community – a place where people can learn more about overall healthcare and not just about the topic of death,” he said.
Cindy Musikantow, the president and CEO of HPNI, hopes that the central location and visibility of the community’s new home on Lake Zurich Road will add to people learning more about what hospice and palliative care can offer. Knowing that she and her dedicated team of experts are available 24 hours a day to help with that conversation is good to know.
What I Hope For
By Carrie Alani
People often ask me how we can do our jobs; how can we face difficult, if not tragic, situations with children that have advanced illnesses, and the families who love them and are trying to cope. Many of us on staff at Hospice & Palliative Care of Northeastern Illinois have had an experience in our lives that shaped our views and led us here.
I’ve waited my entire life for this position.
It was no accident that I heard a child’s voice in my mind calling for help while driving in my car. I followed those cries to a building that I had never noticed before on my travels. It took all of my weight to open the door.
Smells and sounds I had never experienced poured out of the darkness. Inside, the conditions were awful. I entered and when I left, I was the newest nurse’s aide at an institution for medically-fragile children. I was 16.
Six months earlier, about 200 miles away, a girl who like me, was also a teenager, had given birth to a premature infant who was seriously ill. The baby’s brain was damaged during delivery, and her eyes were blinded from the treatments used to keep her alive. Scared, the young mother abandoned her, leaving her to be placed in that very same facility that somehow got my attention.
The baby’s path and mine crossed as I went about my duties. I latched onto her – she was my favorite patient. I began to see beyond her disabilities. So did my parents. They fell in love with her.
A year later, she became my adopted sister, Kim.
Though she never walked, she taught me to stand up for those who cannot. She never spoke, but she taught me to use my voice. She was blind, but encouraged me to see the future. She died 10 years later in my Mom’s arms. Her life - and death - set me on a path of caring for the sickest children and helping parents with unthinkable circumstances. How do I do my job? How could I not?
Today, I hope for a greater understanding of the quality of life, trying also to see what that means through the eyes of our pediatric patients. Quality of life is in the moment. Milestones change. For someone who used to be able to communicate with a smile, now a blink of an eye might be a milestone. I look beyond what is obvious in someone’s condition to see their soul.
The path for families with fragile children is often an unending sacrifice. No matter what the diagnosis – there is suffering. Hope’s Friends and the pediatric team at HPNI work to ease suffering on all levels. While most care is provided in the child’s home, the Pepper Family Hospice Home and Center for Care offers a much-needed alternative to hospital care, especially when shortened lives are ending or there is suffering.
A Peaceful Ending
By Mary Klest
THE END STARTED ON WEDNESDAY. My mother’s condition in the last years of her life demanded a lot from her and from me. A stroke had left her right side paralyzed. She had broken her hip. She had pneumonia, spending a week unconscious on a ventilator. Remarkably, she had survived all of this.
I was weary, angry, impatient, and afraid. My mother followed the path willingly. She was not interrupted when facing the newest diagnosis of congestive heart failure. She felt comfort from her doctors, the hospice staff, and a Catholic priest. She told me she would die soon. I told her she didn’t know. She said she did. “Do not,” I responded.
Six months earlier, her doctor mentioned hospice care to my mom after she had told him: “No more hospitals.” After talking with a hospice nurse, who reassured me that my mom could seek medical help if she needed it, we signed up. Like most patients with terminal illness, my mother wanted to avoid suffering, be with her family, contain costs, remain mentally aware, and not be a burden to any of us. We put the orange “do not resuscitate” sticker on her refrigerator next to photos of the family. She gave me power of attorney to act on her behalf in making legal and health decisions. We talk openly about what needs to be managed.
On Thursday, her voice is nearly gone. I stay with her through the night. I drop medicine into her mouth as if she were a little bird. I fluff her pillow. “Mom, it’s time to sleep.” She cannot respond, but knows it is me. She calls my name several times during the night. The physical body has shrunk, forming an s-curve atop the bed. It seems useless. Yet the spirit still swirls – restless – not ready.
On Friday, I rake leaves. All I want is to be in my yard. I plant some daffodils “beside the lake, beneath the trees,” recalling the poem by William Wordsworth that my mom liked so much.
On Saturday, I hear my brother’s voice on the telephone. “Her breathing has changed.” I arrive to see that my brother, Terry, is there too. We pray “The Our Father and the Hail Mary.” We tell her that we love her. Terry puts on Celtic music; it is beautiful and soothes us. The room smells like gardenias. The flowers are floating in glass vases left over from the party we had days ago to celebrate her 56th wedding anniversary.
We call our siblings on the telephone and reach none of them. Terry leaves a message that Mom’s health is bad. We take a break and walk along the highway. It feels good to walk. It starts to drizzle. The sky is now covered with gray when we return.
We feel prepared. The deep, slow breathing continues. Her mouth and skin are dry – dehydrated from the ordeal. Her lips have little blue dots on them. Her color is yellowish.
We continue talking to our mom. Hearing is the last thing to go, I remember the hospice nurse telling me. I wonder about this because our mom was given morphine. I talk to her anyway. As I am talking, a tear drops from her cheek. She is listening. She is telling her children goodbye. Or, perhaps, she is seeing a glimpse of God. I will never know.
Father Britto appears in the room with us. I tell her, “Father is here.” He begins turning the pages of his prayer book. He raises his hand to her forehead, and begins reciting the beautiful prayers of death, Psalm 23. My hand is holding her. I am watching her breath get shallower as I listen to the prayers. He calls on the Saints to welcome her…her breath stops. I hug the priest, repeating the words thank you. He says, “Your brothers need you.” I turn and see them sitting on the bed sobbing. We put our arms around each other in a huddle and cry. The clock on her dresser says 2:54. It is Saturday, November 12.
What began as a frightening, uncertain journey ended with a peaceful transition. Sometimes I wonder how different it would have been had I kept my resistance up, guided by my anxiety and the words of strangers. Hospice referred us to a doctor sensitive to life’s limits. There were no appointments to get to. They came to us. We had access to 24 hour nursing care. We shared our days unencumbered by paperwork or medical procedures. The chaos turned to calm. Best of all, we clung to our family’s traditions within the comfort of home. Our mother was allowed to die the way she lived, surrounded with love and filled with faith.