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Palliative Care Stories

With a few details changed to protect identities, the following are recent real stories. The purpose of palliative care is to relieve suffering and improve quality of life for patients facing any serious illness, as well as for their families. All the doctors involved in a patient's care share the desire for a cure, and all are committed to helping their patients find that cure. Yet without expert management of complex and disabling pain and other symptoms, people cannot fight their illness. They can't be the parents and grandparents they want to be. They can't live fully−and they are afraid. Palliative care professionals, working closely with the primary doctor, get pain under control and let people get back to focusing on the main goal: regaining control and quality of life. But it takes expert palliative care to get there.

Early Palliative Care: Improving Quality of Life A landmark study on the integration of palliative care during early onset of a cancer diagnosis was recently published in the New England Journal of Medicine. Jim Windhorst, a stage IV, lung cancer patient describes how palliative care helped him cope with his illness.

Millie's Story

Millie is a petite woman who looks younger than her 57 years, but she has a failing heart. Even the smallest amount of physical exertion causes shortness of breath and other symptoms such as arm pain, so her cardiologists brought in the palliative care team.

The team was asked to help manage Millie's pain and other symptoms and to help her grapple with the knowledge that her heart was losing its ability to pump strongly enough. They were also asked to help her with decision-making.

Millie could go home on her intravenous medication, but neither her son nor her daughter was going to be able to accommodate her needs. This is a common scenario in today's families, so the palliative care team had to move to plan B - a nursing home. But no nursing home could be found that would accept a patient on this type of medication. What came next? Next, was plan C - living in the hospital.

Millie is now living in the hospital and receiving her medications. With Plan C in operation, the palliative care team has continued to help Millie feel as comfortable as possible and experience the best possible quality of life. This included providing the services of a massage therapist and transforming her hospital room with a beach motif so Millie could feel the freedom that the sea and sand always gave her. With the help of palliative care even her appetite improved! One day Millie said, "I would love some grilled salmon and rice. And if you can find some sugar-free ice cream, that would just be delightful."

Deborah's Story

Deborah is a 36-year-old mother of an eight-year-old girl and a five-year-old boy. Diagnosed with breast cancer two years ago, she has metastatic disease involving her bones. This condition is causing severe pain. It has been hard to care for her children and get to work. Her oncologists, renowned leaders in their field, have focused intensively on controlling her cancer and identifying the chemotherapy plans that are most likely to work for her.

Deborah intends to fight this cancer with everything she has, and to be here for her kids as they grow up. Recently the pain has gotten so bad that she has been unable to sleep or eat, spending much of her day curled on her side in bed. She missed a course of chemotherapy because of the pain, and she has had to hire outside help to get her kids to and from school.

Her longtime internist finally referred her to the palliative care team at her local hospital. Within two days of beginning low-dose opioid therapy, her pain was well controlled; she was up and around, sleeping and eating, and back to her normal life with her family. She has been able to complete her latest course of chemotherapy, and her oncologist feels her scans are showing a good response to the treatment.

Deborah thinks every patient with cancer should work with a palliative care team along with his or her oncologist. She wonders how she would have gotten through her illness without them.

Andrew's Story

Andrew was recently diagnosed with pancreatic cancer. The tumor was too large to be removed by surgery, so he was started on chemotherapy to try to shrink the mass.

The diagnosis of cancer was extremely upsetting to him and his family. Faced with a life-threatening illness, he was deeply sad, had a hard time sleeping, and worried about his wife and child. He also had severe pain.

Andrew came to see the palliative care team for pain control and to help him cope with the stress of his illness. He was treated with pain medications that made him much more comfortable. He also spent a lot of time talking with the doctors and nurses about how to manage his illness. He learned ways to talk with his daughter and stay hopeful throughout his treatment.

Throughout this time, Andrew has been receiving chemotherapy; his cancer is responding well.

Kay's Story

Kay has primary pulmonary hypertension, a rare condition of the blood vessels in her lungs. There are no treatments that can cure her illness, and she needs multiple medicines.

She is admitted to the hospital almost every month because she has a hard time breathing. Episodes can be brought on by a mere cold or changes in the weather. During these hospitalizations she receives extra doses of medication, but it takes a few days for her to feel better.

Each time she is hospitalized, the palliative care team works with her heart and lung doctors to treat her breathlessness. The medications they prescribe allow Kay to feel calm and comfortable.

With the team's help, Kay filled out an advance directive to make sure her doctors know she would never want to be on a ventilator. This does not change Kay's treatment when she is admitted. But now the doctors understand what she would want if she were too sick to breathe on her own.