MORE IS NOT BETTER
Lacking a clear understanding of the medical prognosis, families may be overly optimistic about the likely success of aggressive, often costly interventions. A recent study in the New England Journal of Medicine found that nearly 70% of patients with advanced lung cancer and 81% of those with late-stage colon cancer did not understand that chemotherapy was unlikely to cure them.
The same is true for many common supposedly lifesaving treatments. Only 6% of cancer patients who get CPR recover enough to leave the hospital, a 2006 study found. And CPR can cause blunt-force trauma, especially for elderly patients, says Harvard Medical School professor Angelo Volandes.
Feeding tubes can lead to infections while doing little to prolong life in the elderly. And a breathing tube may extend life but detract from its quality -- many patients must be restrained or sedated to avoid pulling out these supports.
When they learn more about the outcomes of aggressive interventions, patients are more likely to reject them.
In one recent study, a group of 101 elderly nursing-home patients watched a video that showed attempted CPR, as well as less aggressive treatment. They were then given a choice of life-prolonging care, limited curative efforts with comfort care, or just comfort care. Eight out of 10 opted for comfort care. Among those who heard only verbal descriptions, just 57% wanted comfort care, while most of the rest wanted life-prolonging or limited treatment.
What to do
Press for the prognosis. Many doctors are reluctant to be frank with families.
A 2010 study in the journal Cancer found that one out of three physicians wouldn't discuss the prognosis with a cancer patient who has four to six months to live and is still feeling well. Instead, the doctors would wait for symptoms to appear or until there are no more treatments to offer.
"Having a discussion about what matters most to a seriously ill patient is uncomfortable for many physicians," says Diane Meier, a geriatrics professor at Mount Sinai School of Medicine. Doctors also have little financial incentive to initiate these talks.
A White House effort to set up Medicare reimbursement for physicians discussing end-of-life options was dropped amid a political uproar -- remember the "death panels"? -- three years ago.
Bottom line: If the doctor doesn't volunteer facts about the chances of recovery, the effectiveness of various treatments, and possible side effects, you have to ask.
Rely on others who have been down this path. Realistic information about treatments and outcomes can often be found at the websites of nonprofit associations affiliated with the condition, such as Cancer.org or Heart.org; major hospital sites, such as MSKCC.org, can be helpful too.
Patient and caregiver support groups may also be invaluable for insight into real-world experiences with different interventions.
COMFORT CARE IS NOT GIVING UP
Palliative care, a specialty that focuses on relieving the symptoms, pain, and stress of serious illness, is one of medicine's best-kept secrets. It's widely available: Two-thirds of hospitals with 50 or more beds offer palliative services. Patients who get this type of care usually enjoy improved quality of life and may even live longer.
For instance, a 2010 study of patients with advanced lung cancer who got palliative care along with standard cancer treatment found they had fewer symptoms, needed less chemotherapy and hospitalization, and lived 2.7 months longer than those who did not get those services. And the costs are usually covered all or in part by Medicare and private health insurance.
Yet only 8% of consumers have a good understanding of what palliative care is, according to a 2011 poll by the Center to Advance Palliative Care. And studies show that many physicians are also unfamiliar with it or fail to recommend it, partly because they equate palliative services with hospice or end-of-life care.
That's not the case -- you can receive palliative care along with treatment. And you don't have to be dying to get these services; anyone with a serious illness is eligible.
Whether or not the patient's condition is terminal, the team-based approach is the same: A palliative-care doctor, along with a nurse, social worker, and other medical experts, works with your family and your doctors to coordinate treatment, provide services that alleviate suffering, and offer counseling, says Porter Storey, executive vice president of the American Academy of Hospice and Palliative Medicine.
Say your brother has advanced cancer and diabetes and is suffering pain and nausea from chemotherapy and elevated sugar levels. A palliative-care doctor would talk to his oncologist and endocrinologist to come up with drugs and treatments that are more effective at minimizing the chemo symptoms while bringing his diabetes under control. A visiting nurse would help with his care, while a social worker might meet with him and the rest of the family to talk about ways to relieve stress.
Palliative services do seem to be gaining more widespread acceptance. Last year New York became the first state to require hospitals and other health care facilities to provide access to palliative care; the state also requires doctors and nurse practitioners to inform patients with terminal illness about their options.
And in October the U.S. Department of Health and Human Services proposed a landmark settlement in a class action that would extend Medicare coverage of skilled nursing and therapy services at homes, hospitals, and nursing homes to any patient who needs it, not just those with the potential to improve.
The terms of the settlement need to be approved by a federal judge, but it's likely to expand services for palliative care, says Terry Berthelot, senior attorney at the Center for Medicare Advocacy, which represented the named plaintiff in the suit.
What to do
Make the first move. If the doctor doesn't suggest palliative care, ask about it. The physician or hospital should be able to offer a referral.
The range of services can vary widely and may be administered through a hospital, hospice program, or independent agency. For a state directory of hospital providers, go to GetPalliativeCare.org; at PalliativeDoctors.org, you'll find listings of physicians.
Tailor the care. To get the most benefit from palliative care, talk to the program coordinator about what your loved one needs most.
Relief from pain, nausea, or other symptoms of the disease? Help managing side effects of drugs or the stress of illness? Guidance with treatment options? Also ask about what other services are available -- in addition to the typical core team members of doctor, nurse, and social worker, many palliative care programs work with a nutritionist, pharmacist, massage therapist, chaplain, and other specialists.
WAITING MAY BE YOUR BIGGEST REGRET
Hospice care, which provides intensive comfort care to the terminally ill, is difficult for many families to pursue because it means accepting that no cure is possible.
Getting this care sooner rather than later, though, often makes a dying person's final days more comfortable. It may also give him more time: A 2007 Journal of Pain and Symptom Management study found that hospice patients lived 29 days longer on average than those who did not receive such services -- perhaps in part, the authors suggest, because of improved monitoring and psychosocial support.
To get the most relief, patients typically need to be in hospice care at least four to six weeks, experts say. Yet the median stay in 2010 was just 20 days, and more than a third of patients die within seven days, the National Hospice and Palliative Care Organization reports.
"The most common thing people say about hospice is, 'I wished I'd done it sooner,' " says NHPCO president Donald Schumacher.
Like palliative services, hospice focuses on comfort care but with a broader array of services, including bereavement counseling for the family.
Most hospice care is delivered at the patient's home or nursing home, with medical costs covered by Medicare and most insurance plans, though you may have co-pays for drugs and treatments. To qualify, your relative's doctor must certify that he is expected to die within six months; if he lives longer, the hospice can renew the certification.
Another benefit: With its focus on comfort care and less aggressive intervention, hospice may also lower health costs for the country. Duke University researchers report hospice use cuts Medicare spending in the last year of life by an average $2,300 per beneficiary and up to $7,000 for cancer patients.
What to do
Vet the program. Most of the 5,000 or so hospice programs nationwide are administered by independent agencies, though some are part of a hospital or nursing home.
Make sure the program is approved to receive Medicare reimbursements, and find out if the hospice has expertise with a certain kind of illness -- say, cancer or dementia. If the patient's home can't easily accommodate the equipment that might be needed or if the kind of care required is complex, a hospice residence or hospital may be a better choice, says Schumacher. For more advice on selecting a hospice, see CaringInfo.org.
Look for backup care. Even with home hospice care, you may need assistance from health aides or private nurses.
Be forewarned: This help does not come cheaply. Families can easily spend several hundred dollars a week or more. Unfortunately, the costs usually aren't covered by Medicare or private insurance (some long-term-care plans will cover a portion of the expenses; check the policy for details).
It won't pay the bills or change the outcome for your family member. But making sure she is as comfortable as possible, in the setting she prefers, is exactly the kind of treatment -- not aggressive, last-ditch interventions -- that can result in a better end for the person you love.
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