Mike Wellwerts and Charles Jeleniewski presented Duane Krieger, Board Member & Retired CEO, with $2,300 raised at the 2nd Annual Rick's Run held on Sunday, Sept. 20th! Rick's Run is in memory of Rick "Mr. Smith" Johnson, long time supporter of JACH. Heartfelt thanks to Mike and Charles and all who supported this event."
Published: Saturday, Feb. 14, 2015 10:56 p.m. CST • Updated: Sunday, Feb. 15, 2015 11:13 p.m. CST
By DENISE M. BARAN–UNLAND - firstname.lastname@example.org
JOLIET – Mary Ann Burns couldn’t wait to show her husband, Jim, their dream townhome.
When Burns was done with the tour, she turned on music and then set the white box that held his ashes on the buffet to await his Feb. 20 interment, the date of his mother’s birthday.
It was a tender moment for Burns, bereavement coordinator at Joliet Area Community Hospice. Jim had entered hospice Sept. 28, the day he and Burns were to close on their newly constructed home.
Jim’s illness – diaphragmatic paralysis – was sudden and unexpected. Jim died Jan. 17, but the snowy weather delayed his burial. Burns, who has helped hundreds of people journey through grief, is now arranging her possessions in the room that should have been Jim’s study and transitioning from the “we” of 43 years to a life of “just me.”
“Our lives were so entwined together,” Burns said. “It’s a day at a time.”
By J.D. Wright, M.D., Medical Director Joliet Area Community Hospice
February is American Heart Month and a time to consider a startling statistic: One in three adults in the United States is living with some form of cardiovascular disease, according to the U.S. Centers for Disease Control and Prevention.
Joliet Area Community Hospice provides education and reference tools on Congestive Heart Failure to patients, families, caregivers, providers and the community.
Congestive heart failure is the end result of most heart disease. The heart does not pump or fill as it should. The body organs are affected as they do not get an adequate supply of blood flow. Its progression is described as stable periods interrupted with sudden events of decline. Symptoms include shortness of breath, fatigue or weakness and leg or ankle swelling.
The hospice team cares for cardiac patients at later stages with social worker and nurse home visits, guided by the patient's physician.
Joliet Area Community Hospice Palliative Consulting Services is open to patients with chronic congestive heart failure who are not ready for hospice, but could be later. There is no out-of pocket cost. Like hospice, the frequency and type of home visit is tailored to the needs of the patient.
Benefits of the program include symptom relief, improved quality of life, coordination of care, strategies to lessen stress, better understanding of the disease process and enhanced patient-family communication.
For more information please call Joliet Area Community Hospice at
815-740-4104 or visit our website at JolietHospice.org.
1. Forgive me for . . .
2. I forgive you for . . .
3. Thank you for . .
4. I love you and always will.
5. It is OK to die. I will be OK.
6. Goodbye. See you on the other side.
1. Because it takes the focus off of the disease and puts it back on the human being and the family and loved ones around them.
2. Because it gives families a plan to follow in the face of overwhelming grief and stress.
3. Because the caregivers are passionate about preparing the individual and the family to take the next step in the human journey.
4. Because teaching our children how to care for the dying in a loving and selfless manner will erase their television and video game driven fears about their own deaths.
5. Because we prepare for births, college and marraige and funerals but we fail to prepare for something we all must face at some point.
6. Because everyone deserves a death with dignity and without pain or fear.
7. Because it no longer means you have only a few days to live. Now it means you can have some quality of life no matter how limited your time.
8. Because it does not neglect the physical, spiritual and mental well being of the dying person and those around him or her.
9. Because primary care providers are ill equipped to manage negative symptoms associated with the dying process but hospice physicians are experts.
10. Because it assists in making the wishes of the dying person known and in helping those around him/her honor those wishes.
Hospice is a gift, not a dirty word.
- See more at: http://deathcafe.com/430/#sthash.4yC6Ypci.dpuf
Not too long ago I suggested hospice to a patient who had progressive cancer, although she likely had months to live. “I don’t think it is time,” she replied, “hospice is for morphine.”
“That is not how I see hospice,” I replied, “I think hospice is about getting the best care and support, even if there is no real treatment for the disease. It is about living well, maybe better. Even hospice is not without hope.”
“I don’t understand,” she said.
So, I told her the story of Tom.
Eight years ago, Tom came under my care for bladder cancer. The cancer had spread to the lymph nodes in the back of his abdomen, and there were a hundred pea-sized cancerous nodules in his lungs. The cancer was incurable, but as bladder cancer often responds to chemotherapy, treatable.
After several discussions about goals and side effects, during which I assured Tom that the therapy would be well tolerated, we began chemotherapy. He did terrible.
Tom developed an encyclopedia of complications. Not one or two, but practically every one. Uncontrolled nausea and vomiting; severe dehydration with kidney failure; bone marrow failure requiring 12 transfusions; fever, sepsis and shock; progressive breathing failure from bacteria pneumonia; breakdown of the tissues of his mouth and gut with life-threatening diarrhea.
Within 10 days of the first milligram of drug entering a vein in his left arm through a delicate butter-fly needle, this man, who had walked into my office feeling well, was on a respirator in an intensive care unit with tubes in every orifice, dialysis machine chugging way at bedside and his family trying to decide whether to “pull the plug.”
Despite our efforts to kill him, Tom survived. By the time he left the hospital he had lost 30 pounds, was without any hair, had sores and deep purple bruises all over his skin, could not walk, was prone to moments of confusion and was on enough pills to stock the average pharmacy. We suggested transferring him to a rehabilitation facility for physical therapy and continued treatment. However, after long conversations, and at his strong request, we moved Tom home and called in hospice.
The minimal requirement for involvement in hospice is that a doctor must state that the expected survival of the patient is less than six months. This was easy, as between growing cancer and the residual complications of his disastrous treatment, I knew Tom would be gone in less than 90 days. He and his family accepted this reality and were thankful that he would be home and comfortable. Therefore, while I planned to see him in the office as long as he was able, the plan was to support him at home until he died.
Hospice did its job. Hospital bed in the dining room. Commode nearby. Trim down the laundry list of drugs to a few pills about comfort. Pain controlled. Out-of-bed each morning. Regular visits and support from nurses, aides, clergy, and an eccentric volunteer who insisted on serving herbal tea and reading the day’s newspaper, even when Tom just wanted to crawl inside. Time passed. The cancer was not treated. Tests no longer performed. Just family, love, and a little hope. Tom got better.
Three months into hospice terminal care, he walked into my office. Tom had gained 15 pounds. He walked with a cane, but briskly without threat of fall. His hair had begun to grow back. His skin was without wound. He was alert, stronger and comfortable. He was back.
Tom and his family asked about prognosis and what the future held. Without x-rays, it was impossible to measure the status of his cancer, but I reminded them that he still had incurable bladder cancer.
“Would treatment help?” they inquired.
“Possibly,” I said, somewhat in shock that they would even ask that question. “We’ve come a long way, so how do we find out?”
We did a CT scan of his chest and abdomen. The cancer was still there, but had doubled in size since our disastrous attempt at therapy.
“What would happen if we tried to treat it again? Could it be done safely?”
“Well, there is still the same chance as when we started that it would respond to treatment.”
And then, to my amazement and confusion, they and Tom said, “We would like to try.”
The technical term is “revoking hospice.” This means you drop out of the hospice program, and go back on active care, with medical insurance paying in the regular manner. Insurance allows you to revoke as many times as you like, and then, if or when you wish, go back on hospice when you need it. It is necessary to revoke hospice to receive chemotherapy. Therefore, that is what Tom did.
When we resumed chemotherapy, we were very careful. We completely avoided the particular drug that we believed caused his major complications. We were very aggressive with extra intravenous hydration, medicine to stimulate his bone marrow and frequent visits. We even admitted him to the hospital for one night, just because he had a single diarrhea-like bowel movement. I called him every day.
Tom did perfectly. He had no significant side effects. He gained strength, weight and mobility, even while he was on treatment. He never had a fever, breathing problem, or vomiting, and his kidneys functioned fine. Moreover, while he did lose his hair, he lost something else. His cancer melted away.
By five months into this new chemo, Tom’s CT scan showed no active disease. A complete remission. While we all knew this was not a cure, that the disease would eventually come back, Tom and his family were elated. He was able to stop therapy and get back to his life.
Tom survived another four years. His cancer did come back. Two more times we controlled it with chemotherapy. He traveled, attended weddings, and watched his grandchildren grow. In the end, when the disease took over, he went back on hospice, with the same group that had saved him years earlier. They took wonderful care of him and his family until the day, at home, back in the dining room, with the sun radiating through lace curtained windows, a noisy 18 month-old running around the room, he died.
Tom was healed by hospice. He showed that hospice is about living, not dying. The end-of-life is about being alive, not being dead. With proper care, proper support, and love, we can share the miracle that is life. What more can any of us wish, then that?
James C. Salwitz is an oncologist who blogs at Sunrise Rounds.
Naomi Naierman, MPA and Marsha Nelson, ACSW, MBA
Hospice is a set of services that we all may need someday — if not for ourselves, for our parents. While death is not an option for any of us, we do have choices about the services we use at the end of life. Hospice is undoubtedly the best option in the last months of life because it offers a whole variety of benefits, not only to those of us who are dying, but also to those we leave behind.
How do you find the most appropriate hospice? Until hospice quality data is readily and easily available to all of us, the experts at American Hospice Foundation have pulled together some tips for choosing the most appropriate hospice. Answers to these questions will give you clues about quality of care and help you make an informed assessment.
What do others say about this hospice? Get references both from people you know and from people in the field — e.g., local hospitals, nursing homes, clinicians. Ask anyone that you have connections to if they have had experience with the hospice and what their impressions are. Geriatric care managers can be a particularly good resource, as they often make referrals to hospices and hear from families about the care that was provided. Anecdote and word of mouth won’t paint a full picture but they are still valuable data points.
How long has the hospice been in operation? If it has been around for a while, that’s an indication of stability.
Is the hospice Medicare-certified? Medicare certification is essential if the patient is a Medicare beneficiary to permit reimbursement.
Is the hospice accredited, and if required, state-licensed? Accreditation (JCAHO or CHAP) is not required and not having it doesn’t mean a hospice isn’t good, but if the hospice has it, then you know a third party has looked at the hospice’s operations and determined they come up to a reasonable standard of care.
What is the expectation about the family’s role in caregiving? See if what the hospice expects from family members is consistent with what the family is able to do.
Are there limits on treatment currently being received? Is there anything currently being done for the patient that a hospice under consideration would not be able to do?
Can the hospice meet your specific needs? Mention any concerns the family or patient have about care and ask the hospice staff how they will address those concerns.
Does the hospice offer extra services beyond those required? Some services fall in a gray area. They are not required by Medicare but may be helpful to improve the comfort of a patient. An example is radiation and/or chemotherapy for a cancer patient to reduce the size of a tumor and ameliorate pain. Some hospices would not be able to afford to do this but others with deeper pockets could.
How rapid is crisis response? If the family needs someone to come to the home at 3AM on a Saturday, where would that person come from? What is their average response time?
What are the options for inpatient care? Patients being cared for at home may need to go to an inpatient unit for management of complicated symptoms or to give their family respite. Facilities can vary from the hospice having its own private inpatient unit to leased beds in a hospital or nursing home. Visit the facilities to ensure that they are conveniently located and that you are comfortable with what they offer.
Under what circumstances are “respite” care and “continuous” care provided? In addition to home hospice care and inpatient care when symptoms prove unmanageable at home, hospices also offer “respite” care (periodic breaks for the caregiver of up to 5 days during which the patient is moved to an inpatient bed) and “continuous” nursing care at home for brief periods at the patient’s home when family caregivers are unable to manage on their own. Ask under what conditions the hospice provides these types of care.
Are their MDs/RNs certified in palliative care? Not having it doesn’t mean the staff is not competent as experience counts for a lot but having this credential is an indication of specialized study in palliative medicine/nursing.
How are patient/family concerns handled? Is there a clear process for sharing concerns with appropriate hospice staff and making sure they are addressed, including a process for escalation if the concern is not adequately addressed at lower levels?
How does the hospice measure and track quality? You are not looking for a lot of technical detail, just a response that indicates that the hospice evaluates its own performance in order to improve it.
What are your general impressions at initial contact? What is your reaction to the people you talk to?
What kind of bereavement services does the hospice offer? Types of grief support can vary widely and may include individual counseling, support groups, educational materials and outreach letters.
Naomi Naierman and Marsha Nelson, are president and vice president, respectively, American Hospice Foundation.
James C. Salwitz M.D.
Today, I hesitated to refer a patient to hospice. The patient is perfect for that model of care. She has strong family and friend supports, multiple opportunities to maintain quality, independence and dignity, and while she has a disease we cannot fix, she will do very well with personal palliation. Nonetheless, I almost did not recommend hospice, because I realize that hospice is going to completely fail to take care of a key member of this patient’s care team. They are not going to take care of me.
The hospice concept places the patient and family at the center, surrounded by the hospice team. The referring doctor is a loose member of that team, but is not involved in the hospice meetings or daily decisions. The problem with this model is that after taking care of a patient for a long time, the doctor is often close to the patient and more or less, emotionally attached. Referring a patient to hospice may result in a significant loss to the doctor.
Hospices usually do not maintain a close conversation or bond with the primary doctor. They send the required paperwork and call with the occasional emergency, but often the next significant contact after the original referral, is to notify the physician of the patient’s death. For those doctors who are not comfortable with end-of-life care, this professional and functional distance may be acceptable. However, for many doctors who fight fatal diseases month after month or even year after year in each patient, the loss of connection is draining.
I have never had a hospice say, “Hey doc, how are you doing? This must be hard on you.”
My loss, my pain, is not acknowledged. Generally, that is ok. It is not the job of the health care system to heal my wounds. However, I wonder if one of the causes of late hospice referral is the abrupt severing of invested patient-physician relationships. Hospices, who are charged with comfort and bereavement, ignore the pain which comes from loosing patient after patient and having no one say, “Are you alright?”
Thus, as I explained hospice to this patient and her family, I made a point of saying that I would still take care of her, that I would be closely involved and that the hospice was not “taking over.” I noted that hospices are so motivated to bring comfort and support into that patient’s environment that they often cut out the treating doctor. My patient’s extraordinarily insightful friend summed up that action, as “militant kindness.” I could never have said it better.
Those of us who fight battles, which we know we will loose, cope with reality by finding perspective. We do not invest in false cures or false hope. We focus on what we can truly achieve. However, we are just human and, not rarely, we fall in love with the patients and families held gentle in our hands. Perhaps, sometimes, it might help if someone would hold us as gently.
James C. Salwitz is an oncologist who blogs at Sunrise Rounds.
Religion can be a mover of mountains, a coach, a ray of hope, and a fortress of solitude. For Eugene Handorf his Christian faith is all of these things as he faces the challenges of living with muscular dystrophy.
Change of Heart
Eugene has been a patient with Joliet Area Community Hospice for only a few short months as a part of the palliative care program. In this time the palliative pediatric team consisting of a nurse, social worker and chaplain have been touched by Eugene’s strong catholic faith.
At the age of 9 or 10 Eugene and his parents, Karen and Fred, attended a Catholic fellowship in Chicago they felt motivated by the Holy Spirit to attend. They were hoping to expose Eugene to a new presenter who had a reputation for exciting and moving presentations. What they did not count on was their son’s conversion from sometimes troubled to devout Catholic. “We were in shock. Eugene accepted Christ into his heart and from that moment on Eugene has had a relationship with Christ and His Father like no one we have met since” says his mother, Karen.
A Dream Takes Shape
A few years prior to their trip to Chicago Eugene had been diagnosed with muscular dystrophy—a diagnosis he took in stride and faces bravely. He began developing a dream of having his own chapel, where he could have family and friends visit and host bible studies or prayer groups. Eventually God began working in mysterious ways. The farm where Eugene and his family live needed new concrete poured and they seized the opportunity to also lay the slab for Eugene’s chapel. Shortly thereafter an uncle came across some extra lumber and roofing materials and the slab became a pavilion. Slowly word got out across the community that Eugene was building a chapel and a dear friend of the family organized a fundraiser for Eugene and his dream. After the fundraiser gifts of all kinds continued to come in to help complete the construction. Pews were donated from various sources and a friend helped Eugene paint Stations of the Cross. The chapel was blessed by Father Don Lewandoswki from St. Jude New Lenox and a Deacon from the Cathedral of St. Raymond in Joliet came out to complete the first service.
Present and Future
Eugene and the Handorfs continue to add on to the chapel with gifts and relics donated by parishioners and members of the community. Every Saturday without fail, Eugene and his parents attend mass at St. Jude’s of New Lenox and Eugene is always in the front row singing as loudly as he can. If he meets someone new it isn’t uncommon for Eugene to pull up in his wheelchair and ask “Do you have Jesus in your heart?” In time the disease has slowly claimed more of Eugene’s body but his faith is as strong as ever. Even the decision to sign up for palliative care came from Eugene and his intimate relationship with Jesus. “Fred and I were hesitant to reach out to Joliet Area Community Hospice, but one day Eugene came up to us and said ‘Mom, Jesus has told me it’s time for this care’ and we couldn’t deny that God has the best of intentions for Eugene.”