You've gotten the phone call no one wants to receive: A close family member has been diagnosed with a life-threatening illness, or one battling a terminal condition has begun to fail. And so begins a medical saga that could last weeks, months, or years, during which you will face some of the most difficult choices you'll ever make.
Should your 82-year-old dad, who has been declining after a stroke, get hip surgery after a fall? Would your 43-year-old sister, fighting late-stage cancer, benefit from an experimental drug that could have serious side effects?
These are wrenching decisions. And while no one wants to think about money at such times, they are also expensive ones -- for families and for the country.
One out of every four Medicare dollars, more than $125 billion, is spent on services for the 5% of beneficiaries in their last year of life. Yet even with Medicare or private insurance, you're likely to face a big bill: A recent Mount Sinai School of Medicine study found that out-of-pocket expenses for Medicare recipients during the five years before their death averaged about $39,000 for individuals, $51,000 for couples, and up to $66,000 for people with long-term illnesses like Alzheimer's.
For more than 40% of these households, the bills exceeded their financial assets. Says study co-author Amy Kelley, an assistant professor of geriatrics: "Many people are shocked by the high out-of-pocket health care costs near the end of life."
If spending all that money helps ensure that the people you love get the best care at the end of their life, you probably think the price is worth it, no matter how high. Yet that's often not the case.
With the process frequently driven by the medical system's focus on performing aggressive interventions at any cost -- and the reluctance of families to talk about death -- many people who are dying do not get the care they want.
Worse, they often suffer through unnecessary, even harmful treatments. Says Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center and author of "The Best Care Possible": "When patients have a terminal illness, at some point more disease treatment does not equal better care."
You and your family don't have to accept the status quo. There are steps you can take so you know what your relative really wants -- and family members know what you want -- and to ensure that doctors follow suit. There is research to inform you about which treatments help and which cause more harm than good. And there are services you can rely on -- increasingly available but vastly underutilized -- to improve quality of life in the final weeks or months of life.
Last month, Money magazine ran Part One of its three-part series on the financial challenges families face when a loved one is dying. The first part, "The high cost of saying goodbye," tackled funeral costs and the tactics some in the funeral industry use to manipulate you into overspending. The final installment, "Looking beyond," profiles a man who has Lou Gehrig's disease and is planning for his wife's financial future without him.
In this story, the second in Money's series, you'll see how frank talk, planning, and the right information about costs and options can help make the end of life as comfortable and comforting as possible. Here is what you need to know.
DENIAL IS THE ENEMY
People do not like to talk about death -- to prepare for its inevitability when they're healthy or to acknowledge its proximity when a family member is terminally ill. Consider: Six out of 10 people say they don't want their family burdened by end-of-life decisions, according to a recent California Healthcare Foundation survey, but nearly as many (56%) have not communicated their preferences.
Here's the problem with denial: By not telling your family the kind of care you want, you give up decision-making power to others -- the hospital, doctors, or a relative who may not know or share your preferences.
Even though most Americans say they would prefer to die at home, for instance, only 24% of those over 65 do so, according to 2009 federal data. The rest spend their last days in hospitals or nursing homes.
Ending up in the hospital often means aggressive, high-cost treatment at the expense of quality of life. A 2010 Dartmouth study of elderly cancer patients nearing death found that 9% had a breathing tube or other life-prolonging procedure in the last month, and at most academic medical centers, more than 40% of the patients saw 10 or more doctors in the last six months of their lives.
"If hospitals have the resources, they are always used," says Dartmouth professor David Goodman.
Even when the person who is dying has made his wishes known, they may be ignored, or his medical team may not be aware of them. A 2010 study in the Journal of Palliative Medicine found that only 15% to 22% of seriously ill elderly patients had their preferences in their medical records.
Studies by the Agency for Healthcare Research and Quality show that 65% to 76% of doctors whose patients had documents outlining end-of-life wishes weren't aware they existed.
What to do
Stop pussyfooting. The best time for family members to share their thoughts about the kind of care and intervention they want at the end of their life is before there's a crisis. If that conversation doesn't happen before a person becomes seriously ill, waiting is no longer an option.
Among the questions to ask: What kind of life-sustaining treatment -- CPR, feeding tube, ventilator -- do you want, if any? Where do you want to be cared for? When you think about the last phase of your life, what's most important to you? (For more guidance, go to TheConversationProject.org.)
Make the choices binding. Only one-third of Americans have advance directives, such as a living will, which lays out preferences for life-sustaining treatment, and a health care proxy, which appoints a person to make medical decisions for you if you cannot.
"Choosing a health care proxy is even more important than a living will, since that person will be interpreting your wishes and making sure they're carried out," says Charles Sabatino, director of the American Bar Association's Commission on Law and Aging.
If you haven't prepared these documents, get on it now. At Caringinfo.org, you can get state-specific advance-directive forms that can be completed without a lawyer or prepared by one as part of estate planning.
Get doctor's orders. Advance directives may not be enough to ensure your relative's wishes are followed. Take an extra step and see if your state is among the 15 (including California and New York) that have adopted a POLST form, or Physician Orders for Life Sustaining Treatment, which is designed to be carried by patients or their caregivers from hospital to home.
Since it is signed by a doctor, it often holds more weight than a living will and is recognized by all medical professionals, including EMTs. (Get more info at ohsu.edu/polst.) If your area hasn't adopted it, ask the doctor about putting a do-not-resuscitate order in place.
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.