New Specialty in Cancer Care

[Barb73]

http://www.curetoday.com/currentissue/f ... index.html

In the recent issue of Cure, there is an interesting article, and it might be as well, for those who do not have a copy this magazine at hand.

ARTICLE:

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Palliative care is catching on in centers across the country, improving quality of life for patients along the way.

By Joanne Kenen

On November 11, 2000, Mark Quasius, then 37, learned that the strange sensation in his right ear was caused by a rare carcinoma in his upper sinuses.

After a variety of treatments, including multiple surgeries on his head, lungs, pancreas, and hip bones, the prognosis for his advanced adenoid cystic carcinoma is pretty good. After consultation with Andrew Putnam, MD, a palliative care specialist at Lombardi Cancer Center and Georgetown University Hospital, his life is pretty good too. Dr. Putnam brought Quasius’s unrelenting pain from the tumor behind his right eye under control after surgeons concluded that, for now, the risk of removing the tumor outweighed the benefits.

Quasius, now 44, can’t work at his old engineering job anymore. But he can still stroll down to the pond on his 30-acre farm south of Washington, D.C., still keep himself engaged with fun fix-up projects around his home, and still appreciate every day he has “with my wonderful, wonderful wife, Beth.”

That people are living longer with cancer as a chronic disease is well known. Because of the growing field of palliative care, people, like Quasius, are also living better.

Palliative care was once a scary word for hospice. Palliative care, the art of easing physical, emotional, or spiritual distress arising from a serious illness, is still the core of hospice care but it now takes place in many other settings—hospitals, nursing homes, and, now increasingly, in outpatient cancer clinics.

Unlike hospice, palliative care patients don’t have to have a life expectancy of six months or less. They don’t even have to be dying. And they don’t have to give up radiation, chemotherapy, or surgery in order to get “comfort care.” Doctors sometimes refer to palliative care as “concurrent care” or “a continuum of care” that can start early in treatment, sometimes even right at diagnosis. The idea is to give patients what they need when they need it, no matter what their ultimate prognosis.

That means both sophisticated medical management of symptoms, such as pain and fatigue, as well as enhanced communication about patient choices. This concept fits the biological principle that illness doesn’t turn from a treatable to terminal situation overnight, but may do so gradually, or even drift back and forth.

“When we walk in, it doesn’t mean we’re not going to treat your cancer anymore. It means that here is someone who is going to focus on the quality of your life, who is going to focus on other aspects of living beside the disease,” says Dr. Putnam. “The oncologist will focus on what the oncologists do best—and want to do. But you’ll also have someone who is going to concentrate and focus on the quality of life.”

Research is now providing the hard data to show the intervention works. A growing number of studies have reported benefit in quality of life for patients receiving palliative care. A recent study conducted by nurse-researcher Betty Ferrell, PhD, RN, and her colleagues at City of Hope in California found a better quality of life and fewer management barriers related to pain and fatigue among lung cancer patients receiving palliative care compared with those who did not receive the intervention.

Getting Access

When Heather Thomas, 34, of Vermont, fell on her kitchen floor a year ago, breaking eight vertebrae and three ribs, her doctors “wondered why I had bones that looked like an 80-year-old woman who never drank milk,” she says. The reason was metastatic breast cancer in her liver and bones. She knows her cancer won’t be cured, but it can be treated. Palliative care at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire, is helping her keep her strength, her spirits, and her sanity.

“If something comes up that I don’t understand or I don’t know who to talk to, their only goal in life is to find the answer. It’s like trying to learn a whole other language when you get a cancer diagnosis. They are my translators,” Thomas says.

Some hospices, particularly larger ones, are developing community-based palliative care programs for cancer patients outside the traditional hospice model, either because death is not imminent or because they are not emotionally ready for hospice care. But they still have pain, symptoms, and emotional issues, and a palliative care team can fill the gap, smoothing the transition to hospice in those cases where it is eventually appropriate.

Some hospices have introduced an approach called “open access,” meaning the patient does fit the standard definition of a hospice patient, including the six-month prognosis, but doesn’t necessarily have to give up treatment, at least not immediately. Though some insurance companies, including Aetna and UnitedHealth, cover open access, it isn’t available everywhere, and it isn’t offered to every patient who may want it. But for some it is a gentle bridge over a chasm between aggressive curative care and what may feel like giving up.

“Open access has struck a chord,” says Carolyn Cassin, head of Continuum Hospice Care, a nonprofit in New York that offers it. “Everyone at the end of life has a right to specialized care, just like you are entitled to emergency room care if you are hit by a bus. The old-fashioned hospices defined themselves by what you could not have. They had relegated themselves to brink-of-death care. But if it’s only brink-of-death care, it’s not that useful. Open access provides a transition. That’s our core business—transition.”

Not every patient who needs palliative care gets it. Not every hospital offers it because of limited resources, and referral can come late. “There is still a mentality of cure, cut, and fix,” says Ferrell, who has been a national leader in training nurses in palliative medicine. “Too often we look at, say, the cancerous lung and forget about the rest of the person.” (Ferrell talks about barriers to palliative care in this issue’s Speaking Out.)

Yet it’s changing. At the major cancer centers around the country, from City of Hope to Memorial Sloan-Kettering Cancer Center in New York, palliative care has become a component of cancer care for inpatients and outpatients, and insurance

plans generally cover it. Some programs are more ambitious and far-reaching than others. But almost always the oncologist remains the primary doctor, with the palliative care team consulting just like any other medical specialist.

“When they asked me if I would be interested in seeing people from the palliative care unit, I didn’t know what to say,” recalls Patty Szostak, 53, who is being treated for a recurrence of non-Hodgkin’s lymphoma at Dartmouth-Hitchcock. “Is this

a death sentence? Are you telling me I’m terminal?” But once she understood palliative care, it made all the difference, not just in her physical comfort but in her emotional and spiritual health. The Dartmouth-Hitchcock team managed her physical symptoms, but also made sure Szostak, an artist and writer who meditates, does yoga, and tends to her horses in Vermont, got massages, Reiki, and even a serenade from a harpist.

Szostak’s response to treatment has been uneven; at one point she was very ill with the cancer infiltrating her brain. “There were two paths I could travel, a path to physical healing or another path that could lead to my death. And somewhere along the line, I realized palliative care was for either option.”

Pain as the Starting Point

Pain is usually what gets the patient to the palliative care team; that’s what initially brought Quasius to Dr. Putnam. But once patients walk through the door, palliative specialists often find other physical symptoms, such as severe fatigue, that the patient may have wrongly assumed were inevitable aspects of life with cancer. The specialist may also address the complicated family dynamics that can burden a cancer patient, or, sometimes, the rough decisions about how aggressively to pursue treatment.

“What palliative care does first of all is improve how you feel,” says Susan Lowell Butler, 64, a 10-year survivor of simultaneous breast and ovarian cancers who endured an arduous clinical trial and is now executive director of the DC Cancer Consortium advocacy group. “You tend to feel that everything you feel is a side effect of the cancer rather than of the treatment, when in fact most of those symptoms are perfectly manageable for most people. With palliative care you don’t have to fight the side effects, so you can just fight the cancer.”

Not every cancer patient will need to call in the palliative care cavalry; some cancers are easier to treat than others. “We get the more complicated constellations of physical symptoms, psychosocial, and spiritual needs,” says Janet Abrahm, MD, a palliative care physician who treats outpatients at Dana-Farber Cancer Institute and inpatients at Brigham and Women’s Hospital in Boston. “The [oncologist] has done the best he can but the person is suffering. Then they call us.”

Palliative medicine was recognized officially as a medical subspecialty in 2006 by the American Board of Medical Specialties, with growing training opportunities for physicians and nurses. Much of it involves administering state-of-the-art pain medication. Some clinics are using high-tech approaches, including various types of nerve blocks or pain pumps (see sidebar). But they also treat symptoms that cancer patients are all too familiar with, including neuropathy, fatigue, nausea, constipation, mouth sores, shortness of breath, and anxiety.

“We have more weapons in our armament for symptoms than the oncologist does,” says Dr. Putnam.

The palliative care team, which can involve doctors, nurses, social workers, chaplains, physical therapists, and nutritionists, can intervene in a crisis. But often palliative care can avert a crisis and let the patient avoid hospitalization and frantic trips to the emergency room, says Nessa Coyle, RN, a national leader in palliative care nursing at Sloan-Kettering. Some patients will only need palliative care during rigorous treatment; others will need ongoing assistance.

. . . . . . .

(Cure, Cancer Updates, Research & Education, Spring, By Joanne Kenen, 2008)

Disclaimer:

The information contained in these articles may or may not be in agreement with my own opinions. They are not posted as medical advice of any kind.

[recce101]

Thanks for posting the article, Barbara. Good palliative care not only increases a person's quality of life, it also enables one to direct more positive energy toward building up the body's own natural defense against threats such as cancer. It's encouraging to see the semantics police riding to the rescue! Aloha,

Ned

[Barb73]

Yes, Ned,

That is in the neighborhood of what I was thinking when I read it.

I'm glad they are moving in a positive direction with thought to more personalized care, and using the words "either/or option" as a saving grace.

I also like your idea about spending energy and the immune system.

Barbara

[CaroleHammett]

Hi, Barb.

Just a quick comment on this article: I was placed on Palliative Care last spring after my pulmonary embolism and radiation pnemonitis struck. My "home team" (physician, RN, CNA, social worker and chaplain (aka spiritual advisor)) provided me with the highest level of "comfort care," so high in fact that by July I was on my way to Disneyland with my grandkids for an unforgettable trip.

After I began having stress fractures (from Prednisone-induced osteoporosis) I went back on Palliative Care again, and in addition to regular treatment my team arranged for a physical therapist, a mental health therapist, an electric scooter, pressure-distribution cushions, etc.

I don't know what I'd have done without them and strongly encourage others to look into this resource.

Carole

[Barb73]

Dear Carole,

That is exactly what I have been thinking with regard to being "chronic."

Of course, it usually takes some time before "semantics" is given a rest. Does it matter? It probably doesn't.

Yes, we can be in palliative care toward whatever, and we can be in palliative care to elongate our survival.

I have been so involved with this over these three plus years, that only those with the disease, or with someone special who has it, can fully understand the nuances of what palliative care can mean and internalizing that meaning for themselves.

A couple of years ago, I read somewhere (lots of reading) that there were those who had received palliative care and had not only survived, but had been CURED).

I believe, if I recall correctly, that the study was done in Australia.

Does that happen often? It probably doesn't, but hey, let's go for it - if need be.

Luv,

Barbara

[CaroleHammett]

Since my diagnosis, I have come to recognize that semantics is everything.

Not only have I "re-defined" palliative care, but also "quality of life;" and as you already know, Barb, I strongly believe (supported in good part by research) that the better my quality of life, the more time I can buy... and, the more time I can buy, the better the quality of my life.

In other words, I have come to see it all--palliative care, time-buying and quality of life--as being part of a single continuum that makes this life worth living--particularly by my new definitions.

Besides which, I wasn't raised to be a quitter.

Carole

[recce101]

I have come to see it all--palliative care, time-buying and quality of life--as being part of a single continuum that makes this life worth living--particularly by my new definitions.

Very well said, Carole! Aloha,

Ned

[CaroleHammett]

Good palliative care not only increases a person's quality of life, it also enables one to direct more positive energy toward building up the body's own natural defense against threats such as cancer.

Ditto for your statement above, Ned!

Carole

[Barb73]

Carole,

You are great.

I read your postings to Bill. They are uplifting and make so much sense.

We have found that being proactive is important.

Unfortunately, not every Cancer Center is offering palliative in that sense. Thankfully, from the very start, Bill's oncologist was in that thought mode.

A team effort needs to be in place.

Thank you so much,

Barbara