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Taking Great Care to Really Care
Sitting in the day room of Hillcrest Nursing Home in Wyncote, Anderson is surrounded by seniors propped in wheelchairs or leaning on walkers. Though at one time these men and women may have lived rich and active lives, many now babble in unintelligible phrases - often, a result of dementia - while others stare into the distance, or hang their heads and rest.
With some effort, Anderson raises her eyes to see Jeff Loss - a jovial, bald-headed, 43-year-old wearing blue scrubs and a stethoscope around his neck - and immediately starts to smile. Loss is her nurse from Home Care Hospice in Northeast Philadelphia, a service accredited by the National Institute for Jewish Hospice, which sends out nurses and social workers to provide palliative care for patients in the final stages of life.
"He makes you feel good," says Anderson in a raspy voice. "He helps you start your day."
Lessening the Pain
Hospice is care given to terminally-ill patients at all ages and stages of life who have no chance of a medical recovery; the main objective is lessening their pain.
To be considered for hospice care, a patient has roughly six months to live, according to Dr. Robert Weisberg, D.O., one of several medical directors at Einstein Hospice, part of the Albert Einstein Healthcare Network.
"If a patient is going to be in pain and the family is going to be suffering, hospice can provide comfort to both - socially, religiously and medically," he said.
Because of her terminal diagnosis, Anderson, formerly a resident of North Jersey, became a hospice patient in November. As a result, her primary-care physician took her off of unnecessary medications like cholesterol-reducers and multivitamins, and kept her on comfort medicines like liquid morphine for pain and certain drugs to combat anxiety.
Yet the amount of personal care increased, with Loss seeing her at least three times a week; a certified nurse aide attending to her for two hours a day, five days a week; and a social worker checking in once every two weeks. Although Loss checks her vital signs, and the nurse aide changes her sheets and assists her with eating, most of the time this team provides Anderson with what she needs most: companionship.
"She actually came around a little bit," remarks Loss. "She's walking down the hall, and she's talking a lot more."
Although Anderson doesn't know how long she has left, the point of going on hospice is for comfort, which in most cases increases a patient's quality of life.
"A lot of people associate hospice with a death sentence," notes Loss. "My philosophy is, 'I'm here to help you live until you die.' That's it. If it takes two years, it takes two years. I'm going to help you live."
With her terminal diagnosis, Anderson, who is Jewish, finds herself thinking about her own mortality much more.
"I feel close [to God] because I'm older," she says. "I think when you get older, you think about him all the time, and you pray a lot. You don't know how much time you're going to have left on Earth; that's why you feel close to him."
When Anderson's time comes, Loss will be there - he tries to be present for every one of his patient's deaths, unless someone specifies otherwise.
"Why have somebody else when I can be there?" poses Loss, who also provides care at the Golden Slipper Health Center in the Northeast, Hopkins Center in Wyncote and Wyncote Church Home, in addition to private residences. "I know the patients better than anybody else. I'm their comfort zone - for their wife, for their children, for the patient."
As distressing as hospice can be for families and patients, the effects of spending long hours working with people on their death beds can also be brutal for Loss, a fact that merely emphasizes the emotional connotation of his surname.
"I cry every time my patients die," he says. "That's just me - because I grow an attachment. It's a tough field. It can be emotionally draining, and every now and then, you have to take a breather. You don't get burned out, per se, but you need to recharge."
Time with his family - including a newborn and a 2-year-old, as well as three boys from his first marriage - represents a way to fight the grim realities of his professional life.
Loss, who grew up in a Conservative home, also finds respite at Golden Slipper's synagogue on the first floor. "This place is great, because I'll go down to the synagogue and sit there, and just kind of pray for about a half-hour or so," he reveals. "I just chill. I'll pick up a prayerbook and go through it, and sometimes, when they have services, I'll sit in the back."
A patient who is part of Jewish hospice receives no different medical treatment than someone in any other type of hospice. Since hospice care is as much psychological as it is medical, the variations come when patients feel the need to explore Judaism in the face of impending death.
Rabbi Dr. Maurice Lamm, founder and president of the National Institute for Jewish Hospice, estimates that 2,000 people remain in Jewish hospice care at any given time. The institute has given out accredidations to 54 hospices across the United States.
Lamm notes that Jewish hospice is different because it allows a dying person to be surrounded by people who hold the same traditions and customs, as well as religious leaders who assit them in prayer.
"Vidui, a last-rights prayer, has to be introduced delicately," explained Lamm. "A gentile can't do it."
Rabbi Moshe Krupka, national executive director for the Orthodox Union, maintains that while holding back sustenance for nutrition or medical treatment for a curable disease are against Jewish law, comfort care is certainly acceptable.
"If there is a terminal illness and it is determined that it is irreversible, you want to make this patient as comfortable and secure as possible in the final stage of life," says Krupka.
He does warn, however, that "we certainly don't want to do anything that would accelerate their demise."
Rabbi Susan Kanoff of Keystone Hospice in Wyndmoor, also accredited by the National Institute for Jewish Hospice, notes differences between Jewish hospice care and that of other faith streams.
"Each room has a mezuzah," she says. "When Jewish families come in, there is the appearance of a Jewish atmosphere: candle-lighting for Shabbat, holiday celebrations. For the last two years, we've also been putting up a sukkah."
The roots of Jewish hospice care stem back to the rabbinic period 1,500 years ago, when people used special references for the terminally ill, differentiating them from others who were temporarily sick, according to Susan Falk, hospice rabbi for the Joan Grossman Center for Chaplaincy and Healing of the Jewish Family and Children's Service.
"It means that they had a special way of dealing with someone that was imminently dying," she explains. "According to Jewish law, you don't actively hasten someone's death, but you would remove impediments to someone dying, as long as it was clear that there was no longer hope for a cure. That principle comes from a rabbinic principle."
Continues the Reconstructionist rabbi: "If you keep someone alive and it's not improving their condition, you can let them die with dignity."
A Bit of Consolation
At the Golden Slipper Health Center, 84-year-old Gertrude Rothman clutches a baby doll tightly to her chest. Dressed in pink pajamas, the toy is Rothman's pride and joy - she never puts it down. Due to her end-stage dementia, Rothman has reverted back in time to when she was raising her two daughters, and now that she has her "baby," she is finally happy. Before a nurse gave her the item, she was constantly crying out and grabbing things from other patients; now, she is calm.
"It's crazy, but it works," says Loss, who has been assigned her case. "She remembers her kids being younger - raising her children was a very strong thing for her. Having that baby comforts her."
When her daughter, Sharon Leib, got word that her mother - who also suffers from diabetes and hypertension - was not going to get better and was recommended to Home Care Hospice, she thought that the end was coming dreadfully too soon.
"At first, I felt shock, and I was scared, because to me it's a sign saying my mother might be going, and to me the thought of losing my mother … " Her eyes begin to well. "Nobody likes to part with a parent."
After just the first week of hospice treatment, however, Leib noticed significant improvement in her mother.
"Her spirit seems to pick up; she seems to be extremely comfortable now," she says. "The extra attention and care that they are getting is just marvelous, and it reflects in my mother."
Conditions often improve in the beginning of hospice treatment, according to Loss, because of the increased care, and some patients have even been taken off of hospice after some time. With the terminal diagnosis, however, families should not expect a recovery.
Rothman is lucky: One of her daughters makes sure to spend time with her every night, and relatives frequently call Loss to get updates on her condition.
Some patients are not so fortunate; they have deep-seated issues with family members that can remain to the bitter end. As such, the job of getting families to open up about past issues often falls on the hospice worker.
For folks like Loss, the draining emotional job will at least bring a paycheck every two weeks. Not so for 66-year-old Eileen Massi, a volunteer who works with hospice patients for the sole reward of helping people in need.
Six days a week, Massi spends time with seniors at Golden Slipper. After a third year of volunteering with the elderly, she decided it was time to step up and do something even more meaningful - so she signed on to Home Care Hospice.
"I felt that at this stage of my life, I was capable of doing more," says the bubbly retiree, who used to work in the publications department of the American Philosophical Society. "I have energy, and I may not always have this energy. I thought, 'I want to be able to give something to people who are not in the position to feel energetic.' "
Massi also hopes that her kindness today will be offered to her in the future, should she ever need it. "That might be me some day," she says.
Her strategy for helping hospice patients is to provide them with little reminders of home, while trying to make them as comfortable as possible: "I bought all my residents bedside lamps because when they're in bed at night and the nurse is busy, they can't turn that overhead light out. That way, there's also a light on, but it's not glaring - more like home."
On the volunteer side, there's an institutional process at work as well. At Reform Temple Sholom in Broomall - one of the few synagogues in the area that has an organized hospice program - a group of eight women attempt to make the process easier on congregants and members of the community. The synagogue's Hospice and Healing Committee began back in 1989, when a member lost her mother and felt that her specific hospice program did not contain enough Jewish content.
Members of the group will read Torah or books about Judaism with a dying patient, as well as just provide their company. They also have a wealth of books that help young children deal with the death of "bubby" or "zayda."
Since all eight members of the committee, all women, are Jewish, they feel that they can relate well to a patient's family dynamic - how they worry and a Jew's thoughts on what comes next.
"As Jews, we're not sure about heaven," says group member Amy Berkowitz, 52. "A Christian person thinks they're going to be with Jesus."
Berkowitz participates because when she lost her own mother to cancer in 1968, hospice programs weren't the norm, and she didn't have much support in resolving her feelings about death.
"Death was like this deep, dark secret," reveals Berkowitz, who later lost her father to cancer. "You didn't talk about it."
Work with the group gives her some solace, and as a nurse, she can provide medical know-how to patients as well.
"I think by helping other people, you sort of do it right for them," she says. "It just makes you a more empathetic person - you have been that caregiver, you have been that loving relative. I think when you have loss, you can understand what they're going through."
The group can be involved as little or as much as needed, and a large part of what they do is provide respite for caregivers, mainly relatives who need to run errands or take care of matters in their own lives. Once, they sat in for a man caring for his ailing wife while he practiced archery - a mental and physical break from the arduous doling out of care.
Along with helping congregants, the group works in conjunction with three formal hospice institutions in Delaware County - Taylor Hospice in Ridley Park, Devereux Foundation in Media and Fair Acres Geriatric Center in Lima.
Berkowitz sees it as a mitzvah to be with someone when they die.
"When you're born, there is a room full of people," she states, "but a lot of people die on their own. If you can be there, it's such a sacred event. It's probably the most gratifying thing you can do."
Editor's Note: Anne Anderson passed away on Feb. 17.
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