A top concern is the emotional pain of patients and loved ones
By JULIE MINDA
BRONX, N.Y. — "Where life continues" is an unexpected tagline for a hospital treating patients at the end of life. But, walking the units of the 200-bed Calvary Hospital here, it's clear there's a lot of living going on. A nurse jokes good-heartedly with a patient. A staff member leads a lively group word game with patients and visitors. A physician enters a patient room with a big smile and warm greeting.
Nurse Elena Filatov listens to her patient’s heart at Calvary Hospital in New York City. The 116-year-old palliative care specialty hospital cares for patients at the end of life.
"Life really did continue for us when my dad was at Calvary, and we had some great days there," recalled Joe Hall, a Rockville Center, N.Y., detective whose father was at Calvary at the end of his life a decade ago. Hall said his family celebrated Thanksgiving with his father at Calvary, and Calvary allowed throngs of his father's friends to join him in his room so the horse racing enthusiast could watch the Breeders' Cup with them. A brother and uncle of Joe Hall also spent the end of their lives at Calvary.
"I feel crazy saying this," said Hall, "but, it couldn't have been better than it was at Calvary. They made it better than we ever expected it would be at the end."
With its 116-year history of tending patients with advanced cancer and other terminal illnesses, Calvary "has seen and cared for more dying patients and their families than any other institution in the world," said Dr. Robert Brescia. He directs Calvary's psychiatric services and its Palliative Care Institute.
Calvary staff address patients' physical pain along with their spiritual and emotional needs. Calvary's Family Care Center offers support to patients and families at a time when emotions can overwhelm reason and spark conflicts.
Its Center for Curative and Palliative Wound Care wards off the pain, infection, odor and emotional concerns that come with chronic wounds, including those nonhealing wounds associated with diabetes, immobility, venous disease and other chronic conditions and the wounds associated with cancer, chemotherapy and radiotherapy.
A 25-bed satellite location in Brooklyn, N.Y., a 10-bed hospice unit in a Manhattan nursing home, and a hospice and home care unit bring Calvary's services into all five New York boroughs as well as into several surrounding counties. Its home care program treats patients with chronic or terminal disease, whether or not they are at the end of life. Calvary's Palliative Care Institute, a research and clinical training initiative, extends its influence throughout the U.S. and around the world.
Brescia said Calvary meets patient needs that acute care hospitals historically have fumbled. "Once a patient is past active (curative) treatment but is suffering significantly and at the end of life, not much was done until recently at acute care hospitals, and patients would die suffering. This is an area where the health care system had failed miserably," he said.
Sr. Eileen Clarke, CSJB, a chaplain, with a Calvary Hospital patient. The patient died in 2012.
Dr. Gail Chrzanowski is medical director of Calvary's Dawn Greene Hospice unit at Manhattan's Mary Manning Walsh Home. She said were it not for the services Calvary offers, many terminally ill people "would be shipped to emergency departments, they'd get a lot of futile tests in those acute settings" and may be subjected to potentially injurious, pointless treatments. Nancy D'Agostino, Calvary vice president for community patient services, added, "The emergency department is where people (at the end of life) are sent when there's nowhere else to go. But there's nothing worse than dying in the emergency department."
Refusal to abandon
Patricia Caffrey, nurse administrator of Cavalry's Brooklyn satellite, said Calvary staff are proactive in treating patient pain, wounds, depression and the delirium that is pervasive in patients at the end of life.
Brescia explained that traditionally in health care, two of the most pronounced forms of suffering at the end of life — physical pain and delirium — have been downplayed and undertreated. When staff spend a lot of time with patients, as Calvary staff do, they can detect and respond to subtle changes in the patients' pain levels and in their behavior. The dosing or timing of narcotics can be altered to maximize pain control and reduce suffering. When a patient shows early signs of delirium, a low dose of an antipsychotic drug or another intervention may prevent severe symptoms such as hallucinations.
While Calvary's aggressive management of pain and delirium set it apart, what "defines us and makes us the most different is how we treat emotional suffering. And that is the most challenging to deal with," said Dr. Michael Brescia, Calvary's executive medical director. (Dr. Robert Brescia is his cousin.) "Emotional suffering has its basis in a feeling of abandonment for patients and families, and we have to return to love, and to be present to patients and families" to relieve this suffering.
Eddie Gorman, head of Calvary Hospital’s therapeutic recreation department, assists a patient with a ceramic project in this 2010 photo.
He said, "We do this by saying to patients and families that we'll never abandon you, we'll never leave you alone."
Dying with dignity
Frank Calamari, Calvary president and chief executive, said the hospital is very intentional in selecting its staff and orienting them into its culture of treating the patient and family as sacred. "From day one, we focus on this culture, so no one misunderstands," he said.
Michael Brescia said one way staff treat patients in a sacred way is to "glorify the body." Calvary nurse Andrea Mejia explained, "We wash and comb their hair, we shave them, we clean their mouths, give them baths, we check their skin, we clip their nails, we take them to our beauty salon. We change their sheets several times a day."
Mejia said, "We also hold their hands, ask if they want to talk or pray. We sing with them, dance with those who can. We treat each patient as an individual. It's a privilege to be there with them at the end of life."
Debbie Feldman is the administrator of Calvary's Family Care Services, the department that coordinates much of the nonclinical support that patients and families receive. She said that, within 24 hours of an inpatient admission, in addition to meeting with clinicians, patients and their families meet with a master-level social worker and pastoral care representative who talk with them about their emotional, spiritual and practical needs.
With a staff of 30 pastoral care workers and 23 social workers from a wide variety of faiths, cultural groups and ethnicities, Calvary can team inpatients and home care patients up with support staff whose backgrounds best match their own. Patients and families have access to support groups, individual counseling services, spiritual care, massage therapy, a manicurist and social work services. Inpatients at the Bronx hospital normally live about 26 days after admission (most will die at Calvary; but some people are able to move home for their final days), so staff respond with urgency when patients express an unmet need or a desire to attain a life goal. Feldman said Calvary has helped patients take the final steps to attain academic degrees and U.S. citizenship. Family members have gotten married at Calvary. Some patients have renewed their wedding vows.
Touch of kindness
Missy Cohen Pirinea of Rye, N.Y., said Calvary staff and volunteers were a source of comfort to her last year as her husband was dying of liver disease. "Once, while at Calvary, I was watching 'The Price is Right,' and I saw a woman win a trip — and it was to one of those places with the rooms on stilts over the ocean, the kind of place I'd wanted to go with my husband. But I'd never get to go with him. I just started crying and ran right down to the Family Care Center. Stephanie, who runs the support groups, held my hand and gave me a hug while I cried."
She said staff and volunteers at Calvary "touched my life in a way no one ever has."
Calvary care venues provide differing intensity of care
While all venues along Calvary Hospital's continuum of care serve people who are beyond the curative stage of their conditions and who are near the end of life, the type and level of palliative care vary slightly by venue.
Patients who may require transfusions, intravenous drips, and who may need more intensive nursing care than could be provided at home, normally go to Calvary's inpatient hospital or inpatient satellite unit.
Home hospice care is provided for patients who have advanced cancer or other chronic and acute terminal illnesses but whose caregiving needs are manageable at home. Care includes management of pain and other symptoms, nursing and medicine, assistance with advance care planning, social work services, pastoral care and other psychosocial and spiritual support.
In both the inpatient and home environment, hospice care is available to patients who discontinue curative care therapies and receive palliative and end-of-life care. Patients normally live 50 days after they start receiving Calvary's home hospice services. According to Barbara Nitzberg, Calvary director of public affairs and community relations, while Medicare patients are eligible for at least six months of hospice care, many patients are referred to Calvary late in their disease process. The late referrals can happen for a variety of reasons, including patients pursuing cures, or patients or family members being in denial that a patient is at the end of life, according to Nitzberg.
Calvary generally assigns different team members to its home care program and to its hospice-specific patients. But it cross-trains those staff members, so home care staff sometimes assist with the care of hospice patients, and hospice staff sometimes provide services to home care patients.
It is not unusual for patients to move between stops on Calvary's care continuum. For instance, someone may be receiving Calvary home care services when his or her condition worsens. That person then may transfer to the inpatient palliative care facility to receive more intensive clinical care. Some of those patients may return home.
Nancy D'Agostino, Calvary vice president for community patient services, said 90 percent of Calvary's home hospice patients die at home.
Calvary intervention team helps deescalate family crises
The end of a loved one's life is normally an intense time for a family, and long-simmering grievances or raw emotions can flare up. To help staff and families resolve conflicts between family members, or between family members and staff, Calvary Hospital created its Family Intervention Team.
Debbie Feldman is administrator of Calvary's Family Care Services, the department that coordinates much of the nonmedical support for Calvary patients and families. She explained that the team of about a half dozen administrators assist in a variety of situations, most of which deal with end-of-life coping skills. Additionally, when family members are disrupting a unit by abusing drugs or alcohol, acting aggressively or threatening staff, the Family Intervention Team will get involved.
The team also can convene when family members are emotionally abusive to each other as they make or reach decisions about their loved one's care.
When a staff member activates the Family Intervention Team, team members assemble, usually quickly and with as many family members as possible. The team hears out all of the family members who wish to talk. Sometimes staff members from the unit will be invited to the meeting to provide their perspective on the situation. The team asks pertinent questions of the family, tries to deescalate tension and attempts to bring family members to a consensus on how to resolve the crisis.
Feldman said families in crisis are challenging. Family members who have been caring for their loved one for a long period of time may resent an out-of-town family member who may have different opinions about the course of a patient's care or unresolved issues with the dying person. Family members who are used to being in control, may now feel powerless when they can do nothing for a dying loved one. The resulting frustration can lead them to escalate situations with other family members, she said.
Often, Feldman said, conflicts arise as family members struggle to accept an impending death. Feldman explained, "Since we receive a lot of referrals from major cancer centers that have a goal of treatment, we have many families that -- one day, their loved one is going through very aggressive (curative) treatment, and then the next day, they are dropped off the cliff, and are making an immediate switch to end-of-life care.
"Sometimes these families are told by the cancer centers, that (their loved one) is going to Calvary to get stronger so the cancer center can return to treating the patient. So, a lot of our families are still hopeful. They're thinking, '(my loved one) may not look good, but there is still hope,'" said Feldman.
Feldman said the Family Intervention Team has had much success in deescalating tensions. "It's so powerful for (families) to have this level of personnel hearing them. (Family members) can feel so vulnerable and like they have no control, but our group says, 'We'll listen.'"
Feldman said whenever possible, the team tries to get the family to the point where every family member who the patient wants to see, can visit. "We believe, to the extent possible, that all of the family members should be allowed to be there and to say good-bye" to the patient.
Calvary customizes support groups
The way people experience and process grief will vary greatly based on their situation and the type of relationship they had with the person who died. An eight-year-old child who has lost her sibling will need a very different type of grief support than a 50-year-old man who is mourning his wife.
At Calvary Hospital there are grief support groups for elementary-aged children, for teens, for young adults, for Spanish speakers, for men, for adults who have lost a parent, for adults who have lost a sibling, for parents who have lost a child and for people who have lost a spouse or partner.
In line with Calvary's mission of compassion and non-abandonment, the support groups are free, both to people who have lost a loved one at Calvary and to people in the broader community. All support groups are led by a master's-level social worker or bereavement counselor, and most are held weekly and last about an hour and a half.
Sherry Schachter is director of bereavement for Calvary and for Calvary's home care services. She said normally up to 10 people attend each group session. The group hears each person' story and experience with grief, withholding judgment and validating that person's contribution.
People come into the groups at various points in their grieving process, said Schachter. But for most groups, people rarely attend beyond about 18 months past the death. Children, Schachter said, tend to come back to process their grief as they age. "This is because at each milestone grief will come out differently," said Schachter. "For instance, a girl who loses her mom at age 10 may be back at age 15 when she starts to date. She may even return when she gets married, and when she has her first child."
In the case of parents whose child has died, Schachter said, "they may stay in a group for years, because this is a death that's not supposed to happen, and there's no sense it's over. They may stay in the group for themselves or to help others" suffering the loss of their child.
Calvary just began a "First day" group that is structured psychotherapy for groups of about eight or so, that will help people floundering after the death of a spouse to find new meaning in their lives.
In addition to its weekly support groups, Calvary hosts an annual, weeklong camp for children grieving a loved one. The camp grows in popularity each year, Schachter said, and last year more than 100 children attended.
Children spend half of each camp day doing bereavement work and half doing fun activities. The bereavement work may involve art therapy projects, creating slideshows of loved ones, or talking with the group. The fun activities may include goofing off with clowns or watching the Harlem Wizards basketball team play.
Schachter said after the camp, parents and guardians notice important changes in their children. They "talk about the difference they see in the child, how they are more open in talking about the loss. It's a very powerful impact."
Calvary shares expertise through its Palliative Care Institute
The Palliative Care Institute at Calvary Hospital aims to elevate the level of care delivered by health care providers worldwide by teaching clinicians and others about the fundamentals of palliative care. "Palliative care treats the entire person and his family, including their physical, emotional and psychiatric pain," said Dr. Robert Brescia, who directs the institute and psychiatric services for Calvary.
He said until recently it was common in medical facilities, both domestically and internationally, to aggressively treat a patient's life-threatening illness, perhaps even beyond the treatment having a positive effect, but then to fail to have the right conversations and make a plan for the person's comfort when cure is no longer feasible.
Brescia said through training and research the institute aims to teach clinicians -- both those working with patients at the end of life, and their colleagues across the continuum of care -- that there is much that can and should be done to aid patients at the end of life.
The institute tailors its palliative care education to the needs of its students, who include medical students, fellows and residents; clinicians from a variety of branches of medicine; and administrators wishing to implement palliative care programs in their institutions, according to Brescia.
Courses can range from a few days, to a few months, to longer. Most include both didactic sessions and experience shadowing caregivers on Calvary's units. Calvary staff, usually directors, teach the coursework, which normally covers topics including pain and pain management, family suffering and care of family members, bereavement, nursing care at the end of life, spiritual and pastoral care and psychiatric care. (Brescia and an assistant are the only staff members devoted primarily to education and research at the institute.)
Calvary has relationships with every medical school in New York and works with each to design fellowships, observational experiences and other programs for students to be trained at Calvary. Over 800 New York medical students, residents and fellows are educated at Calvary annually, according to Brescia.
Most of the international visitors Calvary welcomes come through the Middle East Cancer Consortium, a collaboration that began in 1996 between U.S. and Middle East Ministries of Health, to share knowledge about palliative care among countries to improve care delivery. Cyprus, Egypt, Israel, Jordan, Turkey and the Palestinian Authority participate in the consortium. In many of these jurisdictions, palliative care concepts are not yet widely known or used, Brescia said.
Many of the institute's research projects are done in collaboration with New York research medical centers; many of the studies explore psychosocial issues, said Brescia. For instance, one study that Calvary partnered on had to do with patients' desire for hastened deaths and the impact that treatment of depression had on those desires. Another study looked at patients' decision making capacity at the end of life. A study on bereavement is ahead.
Brescia said through the training and research work, "we are taking what Calvary does in the Bronx and taking a piece of that to all these other places."
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