7 tips for receiving better cancer care near the end of life

Care for patients with advanced cancer varies drastically throughout the U.S. Photo by BSIP/UIG via Getty Images.

Looking for the best care possible for you or a loved one facing advanced cancer? First step: consider your location. A recent review of Medicare patients by the Dartmouth Atlas Project revealed some glaring discrepancies in care throughout the nation.

– In Manhattan in 2010, 43 percent of Medicare patients with advanced cancer died in a hospital, compared with just 12.2 percent in Sarasota, Fla.

  • In McAllen, Texas, more than half of Medicare patients with cancer spent time in an intensive-care unit in their last month of life, compared with 10.7 percent in Appleton, Wis.

  • And patients with advanced cancer in Bend, Ore. (82.2 percent), were three times as likely to receive hospice care than those in the Bronx (26.7 percent).

These wide variations should be cause for alarm nationwide, according to the authors of the Dartmouth Atlas report. They believe that the numbers run counter to the fact that “most patients with cancer who are approaching the end of their lives prefer supportive care that minimizes symptoms and their days in the hospital.” And they conclude that “unfortunately, the care patients receive does not always reflect their own preferences, but the prevailing styles of treatment in the regions and health care systems where they happen to receive cancer treatment.”

So what steps can you take to ensure that you or a loved one have control over your care? Below, find seven tips from Dr. David Goodman, co-principal investigator for the Dartmouth Atlas of Health Care Project, and Dr. Ira Byock, a palliative care physician, professor of medicine at the Geisel School of Medicine and author of “The Best Care Possible.”

7 Tips for Fixing Long-Term Care in America, According to Drs. Goodman and Byock

1. Cancer is personal, and so is your care.

Anyone who has cancer — or loves someone who has it — knows that cancer is profoundly personal. From the moment the test results come back and a doctor utters the words, “I’m afraid you have cancer,” people’s worlds are shaken. Getting the best care becomes paramount. These days, that entails finding the best doctors and cancer centers in the area, searching online for treatment options, and seeking second (and sometimes third and fourth) opinions.

The solution begins with recognizing that because cancer is personal, the “best care” must be defined one person at a time. Evidence-based “best practice” treatment guidelines for specific types and stages of cancer are invaluable. However, quality health care requires tailoring treatments and plans of care to reflect the values, preferences, and priorities of the patient living with cancer, so the care is truly “patient-centered.” Some people want all possible treatments to prolong life, regardless of discomfort; others set limits on the amount of discomfort and treatments they will accept. The right choice is one that is well-considered and made by a well-informed person (and family) in collaboration with health care professionals.

2. Be your own guide.

The diagnosis of cancer turns patients and their families into “consumers” of health care when determining treatment options, to ensure that their care is not only based on the best medical research, but also aligns with their personal preferences for the type of care they want to receive and where they want to receive it. Becoming an effective, discriminating consumer is essential because, as our recent research from the Dartmouth Atlas shows, styles of medical practice vary dramatically from one region of the country to another — and even from one medical center to another within large cities. These regional and institutional practice patterns influence the types of care people receive, without their knowledge, and often in ways they would not want.

When working with a doctor to decide on the care you or a loved one want at the end of life, it’s important to consider a few basic questions: What is most important to you as you think about the end of your life? Where would you like to be during your final days? Who would you want to care for you? What types of treatment would you want, or not want? The answers vary from person to person, so it’s important for all patients with cancer to consider their options to guide their treatment plans.

3. Go for the cure…

If you have a curable or highly treatable cancer, go for it! Get the best treatments you can and, within reason, stick with the program through predictably difficult times. Advances in oncology have made many of today’s treatments well worth the effort.

4. …But understand that more is not always better.

If your cancer advances despite treatments and you find your strength, energy, appetite, and overall stamina are waning, be cautious about excessive medical care. The longstanding assumption is that the more diagnostic tests and treatments patients receive, the better off they will be. However, Dartmouth Atlas research has proven that this supposition is often wrong.

In advanced illnesses, including cancer, higher levels of medical treatments are commonly associated with more suffering, but little or no extension of life. Yet when a person is getting sicker, the desire to do something is strong. Under the influence of the more-is-better mentality, well-intentioned clinicians and loving families can inadvertently cause people to spend precious, fleeting days at the end of a long illness in hospitals and ICUs, instead of at home or other places they would rather be. No one likes to think about themselves or someone they love dying, but in the course of incurable cancer, there often comes a time at which more treatment does not equal better care. It’s important to remember that the best care may be care that helps people live as comfortably and fully as possible through their final days.

5. Palliative and hospice care can help people live longer.

Don’t confuse palliative and hospice care with giving up hope of living longer. In actuality, patients with invasive cancers who receive palliative care along with cancer treatments tend to enjoy better quality of life and live longer. Similarly, cancer patients who receive hospice care tend to live longer than those who don’t.

The reasons are not mysterious. Palliative and hospice care teams provide meticulous clinical attention to people’s pain and other symptoms, as well as support for their emotional and spiritual concerns. These programs provide medications needed to control pain and other discomfort, visits by highly skilled nurses, a team of professionals, and quick access to someone to answer questions or manage problems 24 hours a day. It’s little wonder that people with advanced cancer who receive such comprehensive whole-person care are able to feel a bit better and survive longer.

At the end of a courageous fight against a relentless disease, the vast majority of people want to die at home, or in a homelike setting, surrounded by people they love and that love them, instead of receiving aggressive care in the ICU, which is draining and often prevents patients from being able to speak or breathe on their own. These are reasonable goals, but planning and preparation are required to reliably achieve them.

6. Conversations matter.

Even a single conversation about end-of-life preferences between cancer patients and their physicians has been shown to improve the chances that people will be comfortable and not burdened with unwanted treatments during their final days. Yet many people avoid talking about dying, as if talking about it will make death more likely.

But if patients don’t talk with their families and doctors about what they would want or not want, how will they know? It is also important for patients to complete an advance directive that formally names those they trust to speak on their behalf in making health care decisions if they become unable to speak for themselves.

7. Don’t take quality for granted.

The genuinely best doctors and medical centers have made care planning conversations and shared decision-making routine. They make it easy for people to get cutting-edge cancer treatments right along with the full services of a palliative care team. Truly excellent clinicians and health systems pay conscientious attention to transitions of care, seamlessly extending care to people’s homes and support to people’s family caregivers.

If you or someone you love is living with cancer, it is wise to consider your options carefully. After all, your care is personal. There is no reason to settle for less than the best.