Dying like a queen

For three decades, the hospice on Jerusalem’s Mount Scopus has accompanied thousands of terminal patients to the edge of their lives. A symposium marked the anniversary event.

By JUDY SIEGEL-ITZKOVICH
Entrance to the Inna and Jack Kay Hospice at Hadassah University Medical Center on Jerusalem’s Mount Scopus (photo credit: HADASSAH UNIVERSITY MEDICAL CENTER)
Entrance to the Inna and Jack Kay Hospice at Hadassah University Medical Center on Jerusalem’s Mount Scopus
(photo credit: HADASSAH UNIVERSITY MEDICAL CENTER)
There are joyful birthday, Purim or Hanukka parties – with cakes, balloons and music – at the Inna and Jack Kay Hospice at Hadassah University Medical Center on Jerusalem’s Mount Scopus, even though the guests of honor know they will be their last.
For the last three decades, a handful of dedicated medical professionals and volunteers have accompanied thousands of terminal patients to the edge of their lives.
“They are helping me die like a queen,” said one grateful woman in a video clip.
“My husband died in a dignified way, the way he wanted,” said another woman.
FOUNDED IN 1986 by Dr. Theodor Fink and nurse Ruth Shahal-Gassner, the hospice provides end-of-life care for adults with cancer, neurological disorders and other conditions with no hope of recovery. It does not encourage unnecessary tests or routine use of oxygen or antibiotics. Staffers do not test oxygen saturation or blood pressure every day. They do provide liquid infusions to prevent dehydration.
The multidisciplinary team includes Dr.
Daniel Azoulay, who is medical director, nurses, social workers, a physical therapist and an occupational therapist.
A 30th anniversary symposium was held at the nearby Schacht Hall on campus recently to mark World Hospice and Palliative Care Day. The word “palliative” refers to the relieving of pain or alleviating a problem without dealing with the underlying cause.
In a very brief appearance, Hadassah Medical Organization director-general Prof. Zeev Rotstein said that as a young physician, he found it so difficult to cope with a dying patient, especially a child, as doctors are taught to treat and cure.
“Yet our abilities to ease the situation for terminal patients is growing, thanks to palliative medicine. The focus is on empathy, not curing. We are moved by the feedback we get from the patients and from their families.
Working in the hospice is not easy, and I salute the medical team for their devotion,” he said.
“It’s easier for a doctor to give another dose of chemotherapy even though he knows it won’t help,” said Dr. Osnat Levtzion-Korach, director-general of the Mount Scopus hospital.
“But even when the doctor knows there is nothing more to do [to prevent death], there is still something to do to reduce pain and make the patient comfortable. Much progress has been made in the last 30 years – things we never dreamed of before – not only for hospice care but also taking care of terminal patient at home.” Levtzion-Korach noted that her own mother died at the hospice.
“We started with two people,” recalled Shahal- Gassner, who still runs the hospice. The cheerfully decorated facility has 14 beds and an average of 180 patients a year who stay for an average of three weeks. Most have cancer, but others have severe neurological or other terminal diseases.
“If the disease is very progressive, the patient is not suited to being sent to an oldage home,” she said.
A graduate of the Hadassah-Hebrew University School of Nursing, she has an MA in Nursing from Tel Aviv University and is a former head nurse of pediatric oncology at Hadassah. One of very few founding hospice directors worldwide still to be in the job so many years after its founding, she doesn’t find the job depressing and loves coming to work.
“We have a very special relationship with our patients. Whether they’re with us for weeks or only days, the relationship is fierce and intense, both with them and usually with their families, too. As for my colleagues – they’ve become my family, almost as dear as my husband and three children. We’ve added to our team over the years, but only very few have left it. In fact, we joke that we’ve produced an entire generation during our time here. Most of us were in our early 30s when the hospice opened, and have taken time off over the years to have babies. I myself have had two. But we all come back.”
“THERE IS absolutely no euthanasia, resuscitation or artificial prolongation of life,” noted the modern-Orthodox, French-born Azoulay.
“Some patients do ask for euthanasia, but we turn them down. Yet there are a lot of other things to do to treat pain and ease respiratory distress, nausea, reduced appetite, tiredness, sleeping problems, restlessness, reduced function, anxiety and feelings of separation.” Between 70% and 100% of the patients suffer from pain.
Fortunately, the variety of palliative medications available there is amazing, Azoulay continued.
“We have visited hospices abroad, and in most of countries in world, they don’t have what we offer. They tell us they are amazed how far we go to ease pain.”
The drugs range from non-opioids to opioids (narcotics) and include paracetamol, Optalgin and other non-steroidal anti-inflammatory drugs, Tramadex, Butrans, Percocet, morphine, Oxycod, Targin, Fentanyl, cannabis, Abstral, and methadone. They also come in a variety of forms including nasal spray and candies to be sucked.
Morphine, he continued, does not necessarily have to shorten life.
“We say it does not kill if you use it at right dose and at right time. We decide on morphine dosage every morning. We listen to the patient and the family before deciding. We did a study in 2011 on the effects of opioids on survival and found it does not have to cause death. For unbearable pain, we sometimes use sedation that reduces consciousness or puts the patient completely to sleep.
This is a last resort only if the patient does not benefit from anything else and only if there is extreme physical suffering and only when the patient, family members and medical team agree. Sedation can help them sleep for several hours at night or in the day.
“Teamwork,” said the internist and geriatric specialist who has worked at the hospice for 22 years, “is what gives us the power to be supportive. There are many hospices around the world that refuse to give morphine, but we do if necessary if it reduces their pain and nothing else help.”
The loss of independence is devastating for most terminal patients.
“It is a severe emotional crisis when they suddenly can’t walk around or even move in bed. Many say that if they can’t stand, they don’t exist. But we have managed to help some patients stand for even a few seconds after lying in bed all he time, and they are satisfied.”
Azoulay praised the Terminal Patient Law, which “tries to find a balance between the sanctity of human life and human dignity on the one hand and the right to autonomy on the other.” Patients can refuse chemotherapy and prepare a living will.
Shahal-Gassner added that another option is subcutaneous (under-the-skin abdominal infusions so they do not dehydrate. A patient can remain alive for four or five weeks solely with such hydration.
THE HOSPICE’S physiotherapist, Maya Abramson, was inspired to work at the hospice when her grandmother was terminally ill. She did physiotherapy exercises on her, “and it did a lot of good for her.
“We did a study of 50 terminal patients who were cared for in the hospice or at home and found a direct and positive connection between physiotherapy exercise and their quality of life. Even when they are only in bed and can’t get up, they can move. Some can be helped to sit on the edge of the bed or a chair or wheelchair. Just sitting up and moving the pelvis improves their mood and self image.”
HADASSAH EIN Kerem chief of hematology, Prof. Dina Ben-Yehuda, said that if integrative or complementary and alternative medicine (CAM) is used to ease the suffering of hospice patients, it should be done carefully.
“It can strengthen the spirit and the body, but herbs, special diets and vitamins can be dangerous, with side effects and conflicts with drugs. It’s hard to assess the medical potential. The border between conventional and integrative medicine is not always clear.”
According to the largest-ever study on CAM by the US National Center for Complementary and Alternative Medicine, which included 31,000 adults, 75% of them had used complementary products. Studies of Israeli cancer patients at three hospitals found that 54% had utilized CAM. “We can’t ignore such widespread use,” said Ben-Yehuda.
“Most patients don’t admit it to their doctors because they said the physician “didn’t have to know,” “knew little about the subject,” “was too busy to discuss it” or that he or she “was probably opposed to it or expressed discouragement of it in the past.”
But studies have shown that even prayer, said the prominent hematologist, could be beneficial if the patient was aware of it or even, incredibly, if the patient was not aware that somebody was praying for him.
In the 18th century, Sir William Withering of England use an herb called digitalis purpurae to ease the condition of cardiac insufficiency patient. It turned out to be an effective treatment, she said, that is today known as digoxin.
“A substance in green tea called EGCG can kill cancer cells, so we advised cancer patients to drink it. If it doesn’t help, one would think, it couldn’t hurt. But green tea can affect the activity of Velcade, a multiple myeloma drug.”
Americans, continued Ben-Yehuda, spent $2 billion a year on Echinacea, a group of herbaceous flowering plants in the daisy family.
People claim that it fights everything from the common cold to cancer, but it has not been proven effective. A meta-analysis has shown that it has no effect. In many packages, what was claimed to be echinacea was not the real thing. There is a big problem of charlatans, she said.
She has also seen a lot of patients using a honey product called Life Me, but it too “has no beneficial effects.”
FINALLY, THE symposium heard Claire Oppert, an art and music therapist from Paris, perform Schubert with her cello for the full-house audience. Then she spoke in French, using a translator, explaining how terminal patients benefit from hearing a live music performance.
“Music therapy is new in palliative medicine, but it has roots in ancient Greece. It causes various motor regions of the brain to work and can reduce pain. It has been proven in clinical studies.”
Sarcoma patients who have to be bandaged in a very painful procedure are much calmer when it is done with a musical background, she said.
“The patient is relaxed enough to give the doctor his hand for bandaging,” concluded Oppert, who has so far given 150 “Schubert treatments” to patients.