‘It’s not a death sentence. It’s patient-focused care’
One day last fall, David Wark of West Topsham awoke barely able to breath.
“I thought I was going to die. I got up and I couldn’t catch my breath.”
Besides emergency care for a truck accident in the mid-’90s, the 58-year-old hadn’t been to a doctor in well over 20 years. But after that 2011 incident, and at the urging of his ex-wife and good friend, he called for an appointment.
A construction worker, Wark was helping with the remodel of Randolph’s Cumberland Farms, so he called nearby Gifford Medical Center.
He got in right away, undergoing pulmonary function testing, X-rays and blood work and then sitting down with internal medicine physician Dr. Cristine Maloney.
“‘Don’t bull#@*# me. Just tell me the truth,’” Wark remembers telling the doctor.
The truth was worse than he expected. Wark, who had struggled with shortness of breath for years, suffered from tuberculosis as a child, experienced asbestos exposure and smoked since his teens, had late stage emphysema, or chronic obstructive pulmonary disease (COPD).
He didn’t know it at the time, but the diagnosis meant Wark was now a palliative care patient.
“Palliative medicine is designed for anyone who has a serious illness,” says Dr. Maloney. She lists cancer, dementia, heart failure, COPD, liver disease, renal failure, stroke, cystic fibrosis, congenital malformations and extreme prematurity as examples. “It’s any illness that has the potential to shorten your life.”
For those patients, palliative medicine focuses on providing relief from symptoms, pain and the stress associated with having a serious illness. It involves listening to patients so their treatment is aligned with what is important to them. It works to enhance the patient’s, as well as their family’s or caregiver’s, quality of life through symptom management. And it includes an interdisciplinary team of caregivers helping to care for the patient’s diverse needs, not just treating his or her disease.
Palliative care is often confused with hospice care.
Hospice medicine is subset of palliative medicine, but is for patients nearing the end of life. Medicare defineshospice care as for a patient who two doctors have determined has six months or less to live and who understands that care going forward will be palliative, not curative, Dr. Maloney explains. Most private insurers have similar definitions, although sometimes allow patients to pursue both symptom management and life prolonging treatments.
Palliative care is offered early and throughout an illness. It doesn’t mean foregoing curative treatments. And it doesn’t mean giving up your primary care provider to meet with a palliative care physician like Dr. Maloney.
Instead it is an extra layer of care, where a doctor spends time with patients to determine their wishes, help them understand their options and navigate the health care system, and answer their questions so they have better control over their disease and their care.
Long-time internal medicine physician Dr. Milt Fowler has referred patients to Dr. Maloney and Gifford’s other palliative care physicians. “My referrals to Dr. Maloney are to have her join forces with me in caring for patients with serious illnesses that would be helped by a team approach,” Dr. Fowler said.
“The palliative care specialty is young, but very useful. Patients who I have referred have felt our team approach has offered them more options and more availability. We have used this team approach both in office consults as well as with a number of home visits, which we often make together,” he said.
Research also backs what Gifford physicians have found anecdotally to be true.
“Many, many guidelines say this is the way to go. If you get patients onboard sooner, they do better,” Dr. Maloney says, citing studies from Massachusetts General Hospital and Dartmouth-Hitchcock Medical Center that found cancer patients undergoing palliative care had a better quality of life and improved mood, and, in the case of the Mass General study of metastatic lung cancer patients, slightly longer lives with less aggressive care.
This type of care also often produces less confusion and conflict with family or friends about a patient’s treatment goals, says Dr. Maloney.
Over a longer appointment than the average doctor’s visit or over several appointments if the patient isn’t yet ready to discuss certain topics, Dr. Maloney determines a patient’s wishes by asking questions – without judgment – about treatment wishes; their home and financial resources, including family support and worries or concerns about their illness; their spiritual beliefs; if they want to know more about their prognosis; and their wishes should they be unable to speak for themselves.
“No one asks people what they want. They make the assumption they want the most care possible, which may not be the best care possible,” says Dr. Maloney, who often hears “I want to be home,” “I don’t want to travel to get treatment,” “I want to play with my grandkids” or even “I want to putter in my woodshed.”
Based on a patient’s wishes, Dr. Maloney then provides help achieving the patient’s goals to the best extent possible. That help might include referrals to a massage or music therapist, a visit with a chaplain or social worker, or help completing an Advance Directive and expressing wishes to family.
In Wark’s case, Dr. Maloney prescribed breathing medications and recommended both that he quit smoking and participate in the medical center’s pulmonary rehabilitation program. He’s chosen not to pursue pulmonary rehabilitation yet, but has cut back on his smoking and says the medications have greatly improved his life.
“It’s a lifesaver. I can walk up my hill now,” says Wark, who is staying active with yard work and walking his Siberian husky dogs.
He knows “there’s going to come a time eventually that I’ll have to have oxygen.”
He’s OK with that. But he has also discussed that he doesn’t want the kind of aggressive care his own mother, for example, received for cancer. “I’d rather live a shorter life, but be more comfortable than receive very aggressive medications. I don’t like it. I don’t want it,” says Wark, who has signed a “do not resuscitate” order, which he’s shared with his ex-wife and keeps on his fridge.
And he remains upbeat about this illness.
“I’m not going to sit around and feel sorry for myself,” says Wark, who should have years to live. “It’s not a death sentence. You just have to deal with it and let the doctor help you.”
In addition to Dr. Maloney, Gifford’s palliative care physicians who can help are Drs. David Pattison, an internal medicine provider and pediatrician, and Jonna Goulding, a family physician. All three palliative care physicians serve on Gifford’s multidisciplinary Advanced Illness Care Team, which aims to promote and provide patient-focused palliative and hospice care both in the outpatient and inpatient settings.
