I spent a day last month shadowing hospice workers from the Visiting Nurse Service of New York. With each visit to the homes of four patients whose lives were ebbing, the caring, patience, attention and expertise I observed left me wondering why all medicine is not like this — focused on the whole person, not just a disease.
Hospice workers never know what they may find when they enter the homes of people whose doctors expect them to die within six months. But they are prepared to handle almost anything and have a team of specialists to call upon when needed: doctor, nurse, social worker, spiritual care counselor, bereavement counselor. The home hospice service is but a phone call away 24 hours a day, 7 days a week. The needs of patients and families are met within hours, if not sooner; moreover, the cost is usually covered by Medicare or Medicaid.
With hospice, death assumes a more natural trajectory, unencumbered by frightening machines and sometimes grotesque interventions of modern medicine that do little, if anything, to prolong life and often make dying more painful for patients and families, as well as costlier for society.
Indeed, studies have shown that, all other things being equal, patients receiving the comfort care provided by hospice tend to live longer and die more peacefully than those who continue to get intensive care for their disease when treatment has ceased to help.
At age 80, Ellen Gladden learned she had multiple myeloma, a cancer of plasma cells in the blood. Four years later, this once elegant and dynamic woman, now a shadow of her former self, lay dying in a hospital bed installed in her bedroom, attended by one or more of her three daughters and hospice workers from the Visiting Nurse Service.
Mrs. Gladden’s hospice nurse, Vanessa Boyce, and Dr. Alfred Hartman, who supports the hospice team caring for her, had explained to the family that the end was near. Mrs. Gladden was turning inward, detaching from life, but although she could no longer speak, she could still hear. The family was encouraged to continue to speak to her, but cautioned against saying anything in her presence they would not want her to hear.
That included the daughters’ argument over the medications Mrs. Gladden was receiving to relieve her pain and reduce her agitation and anxiety, common symptoms as death approaches. Two daughters agreed that the drugs were necessary to keep their mother comfortable, but the third thought her mother was being overmedicated, making her unable to communicate and hastening her demise.
With patience and caring, Ms. Boyce and Dr. Hartman explained yet again why the drugs were being used. Seeing that the one daughter remained unconvinced, they offered a compromise: reduce the medication by half. If Mrs. Gladden remains comfortable, fine. If not, they can increase the dose.
Another crisis resolved in the lives of two hospice workers who typically visit four or more patients a day.
Extending a Life
Mercedes Perazzo, 87, a former ambulance technician for New York City whose life force now waxes and wanes because of congestive heart failure and diabetes, attributes her longevity to the care administered by her hospice team for the last 16 months. Her doctor thought she would die in a few months, but her spiritual care counselor, Henry Schoenfield, said she had rallied under the comfort care she received.
“I was very ill,” Ms. Perazzo told me. “But the care I got through hospice helped me live much longer than anyone expected.
“The entire team — all are excellent. They really care for people. The nurse, Eileen, takes my blood pressure, checks my whole body, arranges my medicines, gives me the supplies I need, calls the doctor if there’s a problem. Sometimes I feel very depressed, but she and Henry make me feel better.
“I had been in and out of the hospital, and they finally told me not to come back. But when I got with this agency, I didn’t have to go to the hospital no more.”
A ‘Reassuring’ Presence
Desiree Harris, a mentally challenged 40-year-old with advanced breast cancer, does not really understand what is happening to her. But her mother, Marie Harris, who has cared for Ms. Harris her entire life, understands that the end is approaching.
“The future doesn’t look too bright from a medical point of view,” Mrs. Harris said. “I know death is a part of life. I discussed hospice with her oncologist, who put everything in place. I want Desiree to be as comfortable as possible. I don’t want her to suffer needlessly.
“The hospice team has been so wonderful, very caring, very informative. I can contact them at any time. It’s so reassuring.”
Stephania Cajuste, the social worker on Ms. Harris’s team, emphasized the value of the team approach. “It can take so many ears to hear what you have to say,” Ms. Cajuste explained. “The patient or family member may say something to the nurse that doesn’t register. If they say it to me, I can go back to the nurse and tell her what I heard and what needs to be done.
“We all listen to each other, because it’s not about us. It’s about the patient and family.”
Mrs. Harris agreed. “The team came on Friday and stayed for well over an hour,” she said. “It felt like family time. Everyone explained their roles and made sure I understood everything. The nurse told me that if I think of anything I wanted to know, I should just call. It was so reassuring.”
Helped After a Spiral Down
Michael Cordovana (“I’m only 80”) had traveled all over the world playing the piano for professional singers. “Then,” Mr. Cordovana said, “all of a sudden my health took a downward spiral.”
Yet during a visit by his hospice nurse, Dahlia Nichols, he remarked: “You can’t believe the care I get. I don’t think I’ll ever die.” He said his home health aide, Tony Williams, was “the greatest gift — he gives me my shower, takes care of my laundry, helps me with my exercises, makes me delicious juices.”
After a check of his blood pressure, temperature, legs and feet, and questions about pain and shortness of breath, Ms. Nichols told him: “You look pretty good. I’m a really happy camper.”
“I feel wonderful,” Mr. Cordovana replied. “It’s such a compliment to the nurses. I’m so taken care of.”
In addition to contacting local Visiting Nurse Services, hospice care can be found through the National Hospice and Palliative Care Organization. Go online to www.nhpco.org and click on Find a Provider, or call (703) 837-1500.
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