Death is not a comfortable subject for most of us. So, it’s no surprise that many people lack basic knowledge about hospice care. When surveyed, a majority say they would prefer to die in their own home … but three out of four Americans don’t realize that hospice care offers that option.

Lack of information, fears and misunderstandings keep many people from reaping the advantages of specialized end-of-life care. Here are the facts about seven common misconceptions:

1. Hospice is not a place. Hospice is an approach to caring for someone nearing the end of life. While hospice care can be provided in a freestanding facility, hospital or nursing home, it’s most often offered in the person’s home. Many people opt for hospice precisely because they can stay at home with loved ones and pets while receiving care. Essentially, the hospice team comes to you. You’re visited by doctors, nurses, counselors, therapists, social workers, home health aides or clergy as appropriate. Round-the-clock phone support is available to caregivers.
2. Entering hospice does not mean that medical care stops. Hospice care ismedical treatment. In fact, hospice and palliative (pain relief) care is a board-certified medical specialty. The main difference in hospice is that treatment is not intended to cure. Rather, medication or therapies are only prescribed to manage pain or relieve symptoms. The treatment plan is reviewed regularly and revised as needed.
3. Hospice is open to people of any age or condition. Many wrongly believe that hospice is only for cancer patients or the elderly. People with diseases from Alzheimer’s to AIDS can receive hospice care, as can children. The main criterion for hospice is that a doctor must determine that the person is not expected to live for more than six months.
4. Most or all of hospice costs are usually covered by Medicare, Medicaid, HMOs or private insurers. This is a big surprise to many. But several studies have shown that hospice care can greatly reduce the cost of treating terminal illness.Plus, hospice usually costs less than care in hospitals and assisted living or nursing homes. Medicare, Medicaid (in some states) and the Department of Veterans Affairs may cover all hospice costs for those eligible. If you have a private insurer or HMO, you’ll have to ask about specific hospice and home care benefits. Many hospices offer “ability to pay” rates, too, or help low-income families to find community resources to cover costs.
5. Hospice can even accommodate most people with high-level care needs or who live alone. Today’s technology enables most people to receive care at home. The hospice team can arrange home delivery of a hospital bed, oxygen tank, remote monitoring tools or other needed equipment. At-home caregivers are taught how to administer medications and use equipment. If there is no capable live-in caregiver at home, the hospice team can help you find a private nurse or a non-home hospice setting.
6. Hospice care does not “hurry death.” The purpose of hospice is to relieve suffering and to make the end of life more meaningful. Hospice staff encourages and aids the person in completing any unfinished business – legal, emotional or spiritual – that can help in coming to terms with death. Treatment may also include activities like music therapy or journal writing to reduce stress.
7. A referral to hospice should not be seen as a last resort. When a terminal illness is no longer responding to medical treatment, continuing aggressive care can deplete someone even more. Hospice empowers people to choose how to spend their final days and die with dignity and peace of mind. One in three families surveyed in one study said they regretted not getting their loved one into a hospice program sooner.

“The old man and the young woman sat across from one another stiffly perched on plastic chairs, staring down at the floor — doctor and patient. The tension in the room, exaggerated by the silence between them, was almost unbearable. Then the patient, stroking a trembling, emaciated hand across a hairless scalp, spoke haltingly, “Doctor, promise me I’m not going to die.”

According to a recent post in the New York Times by columnist Jane Brody, this type of interaction with a terminally-ill patient creates occupational distress for many doctors who are not equipped emotionally to handle such a difficult situation. She states that doctors who are unable to cope with “their own feelings of frustration, failure and helplessness … may react with anger, abruptness and avoidance” toward their patients who are dying. When this occurs, doctors may recommend futile treatments to patients at the end of life because they cannot connect with those patients on a human, suffering level and have nothing else to offer them.

The article touts mindfulness meditation, a practice recommended by palliative care specialist Dr. Michael Kearney, as a solution for discontent and disconnected doctors. I wholeheartedly agree that mindfulness meditation can be a very helpful practice for calming anxiety and learning to be present. However, I believe that this problem — doctors who find themselves unable to cope with perceived failure when a patient is dying — requires a deeper and more fundamental solution: Doctors need a new understanding of death and, therefore, life.

These are the fundamental truths of death and dying that should be taught to every medical student from the first day of training:

1. Death is inevitable.

Every living thing on Earth will die. Death ultimately cannot be avoided or prevented, even though it can and should be forestalled when reasonably possible. The fact that every patient eventually dies creates a sense of hopelessness and futility for doctors if they pit themselves against death as an enemy — for that is a battle that can never be won. But those who recognize that the end of life is actually the final stage of human development can help their patients face their last days with dignity and make reasonable choices for their care and treatment.

2. Death is a mystery.

No matter how hard we try, we simply cannot control or accurately predict when natural death will occur. In my hospice work I have seen many patients who lived far longer than expected, against all reasonable odds, and I have also seen patients who died much sooner than expected, from causes not related to their terminal illness. We have to accept this mysterious nature of death even while we work to circumvent it or prepare for its arrival.

3. Death makes life more precious.

When life is perceived against the dark backdrop of death, we can see how it shines and glistens for us, evermore precious because it is fleeting. This is the gift that our mortal nature provides us — an opportunity to cherish each moment simply for the fact that it will not last.

4. Dying provides an opportunity for transformation.

In my work with hospice patients I have witnessed over and over the transformative power of love and forgiveness during the last days of life. When dying is respected as a natural part of life and time is allowed for the process to unfold, patients can turn their focus to matters of the heart and soul and find meaning in both life and death. But this does not happen when death is perceived as an enemy that must be resisted until the final breath is taken. Doctors can help their patients change focus by advising them with honesty when the time comes that pursuing further treatment is futile and will cause more harm than benefit.

In my ideal world doctors would be educated in the wisdom of all aspects of health, including the decline of physical health that ends in death. Doctors would be the guides who help us make reasonable choices, who see beyond our fears, and who possess the compassion and tools to ease our suffering. Doctors then would be the wisest members of our society, never deluded by the myth of immortality.

When a doctor such as this is asked by a patient, “How can I live, knowing I am going to die?” the answer would be:

“You must turn your focus to those things that matter the most to you. Put your energy into living each and every moment fully rather than trying to escape death. Then when the time of your death arrives — and no one really knows when that time will be — you won’t feel bitter and deprived. You will be filled with the joy of a life of meaning — no matter how many years of life you have been given.”

Healing takes place not when death is forestalled, but when life is embraced and affirmed in its entirety, from beginning to end. When doctors can fully understand the nature of death and dying, they will become the true healers that are desperately needed in this world.

A new study says almost one third of Medicare’s beneficiaries use the program to pay for end-of-life care at nursing homes, which may not be equipped to treat or prevent pain and suffering.

Those palliative care services are usually associated with hospice care, while nursing homes are typically for rehabilitation and long-term care.

The study’s researchers, who published their findings in the Archives of Internal Medicine on Monday, say the findings suggest that palliative or hospice care should be incorporated into Medicare’s nursing home benefits.

“Often our focus on these patients is trying to keep them functional or independent for as long as we can. What we may be overlooking is that they are on an end-of-life trajectory,” said Dr. Katherine Aragon, the study’s lead author from Lawrence General Hospital in Massachusetts.

Medicare, the federal health insurance program for the elderly and disabled, pays for 100 days of skilled nursing facility care after a person is hospitalized for at least three days.

Under those benefits, the program pays 100 percent of the bill for the first 20 days of care, and all but a $144.50 per day copayment after that.

That may be less expensive for patients and their families than using Medicare’s hospice benefits, which does not pay for room and board. Patients need to pay for that out of pocket, through additional insurance or Medicaid – for which many may not qualify.

For the study, Aragon and her colleagues at the University of California, San Francisco, gathered information from a database to see how many people – recently released from a hospital – used Medicare’s nursing home benefits during the last six months of their lives.

After looking at information on more than 5,100 people between 1994 and 2007, the researchers found that about 31 percent had used the nursing home benefits in those last six months, and about nine percent died while still using those benefits.

The study, however, cannot say what type of care those patients received before their deaths. It also doesn’t say how much those stays cost the Medicare program.

Aragon told Reuters Health that some nursing homes are offering palliative and hospice care, but she does not see the current situation changing without the homes being reimbursed for the care.

Dr. Peter Boling, from Virginia Commonwealth University in Richmond, told Reuters Health that it would most likely require legislative or regulatory action.

“It ends up being all about the money in the end, which is always the case,” said Boling, who wrote a commentary accompanying the new study.

Assisted suicide. Euthanasia. Death panels. Rationed health care.

There’s nothing like a well-chosen phrase to inflame talk about end-of-life care — how the health-care system cares for those who are in the last stages of a terminal illness and how much control patients and their families have over that process.

It can be an emotional and divisive issue, and for lawmakers, a dangerous business. That’s certainly something President Obama quickly learned when a provision in the Affordable Care Act (ACA) that encouraged doctors to engage patients in discussions about end-of-life care quickly deteriorated into a nationwide war of words over whether such one-on-one discussions between patient and physician would result in “death panels” determining who should receive care.

But with America rapidly aging, the subject of end-of-life care isn’t going to go away. It has the attention of any legislator or government official trying to make sense of health-care budgets in general and Medicare expenditures in particular. That’s because in their last year of life, older adults consume more than a quarter of Medicare’s expenditures, costing more than six times as much as other beneficiaries. It also has the attention of hospital officials. Under the ACA, hospitals will be penalized by Medicare for high readmission rates. That means there will be more focus on avoiding the ping-ponging of terminally ill patients that often takes place between nursing homes and hospitals as people near the end of their lives.

Meanwhile, an increasing percentage of Americans say they want more control over how they will be treated should they become terminally ill. Faced with the mechanistic environment of hospital intensive care units, many older patients say they prefer to die at home, surrounded not by machines but by their family. Others want every option explored, every high-tech trick tried to prolong their lives, even if they are unconscious.

Today, the discussion over end-of-life care is alive and well — but not on a national level. “It’s pretty quiet right now, and has been since 2009 and the whole death panel debate,” says John Carney, president and CEO of the Center for Practical Bioethics, formed in 1984 to parse out complicated ethical issues around medicine and medical research, including issues like end-of-life care. Rather, the debate and press toward a political solution are currently taking place at the state level. There, policymakers and advocacy groups are managing to defuse the raw emotional responses that national, partisan-fueled battles elicited when the ACA was being debated.

The reason for that is straightforward. Rather than pursuing the “death with dignity” approach to end-of-life decisions — which immediately inflames the right-to-life lobby — a low-key movement has evolved in the states. This movement is focused on giving patients facing tough decisions about end-of-life care more say in what medicine and medical procedures they want or don’t want.

If advocates for more rational and patient-centered end-of-life care can avoid the specter of death panels and health-care rationing, there’s the real possibility of progress. Dr. Susan Tolle, who practices general medicine in Oregon and serves as director of the Center for Ethics in Health Care at the Oregon Health & Sciences University (OHSU), says, “When people are using language like ‘death panels,’ there’s more emotion and fear than if you say you want to honor the wishes of this individual.”

One tack that end-of-life care activists are taking is to push state legislation requiring health-care professionals to counsel terminally ill patients and their families on medical choices and palliative care, which is an area of health care that focuses on relieving and preventing the suffering of patients. Such initiatives have not triggered a negative response with right-to-life interests. But that doesn’t mean it has been easy to pass such laws.

According to the national chapter of Compassion & Choices, which is dedicated to advocating for more open discussion around alternatives to intensive and intrusive end-of-life interventions, only California and New York have counseling laws on the books. In New York, it was the Medical Society of the State of New York that came out strongly against the Palliative Care Information Act. Doctors there argued that it inserts the state into what should be private physician-patient relationships. That argument didn’t get far in Albany; the law passed in 2010.

Last year, New York took that approach one step further. The Legislature passed the Palliative Care Access Act, which requires institutions like hospitals, nursing homes and other long-term care facilities to offer end-of-life and palliative care counseling. This step is more significant than the Palliative Care Information Act. According to Kathy A. McMahon, president and CEO of the Hospice and Palliative Care Association of New York State, it has led to a statewide coalition of all the health-care organizations that represent institutions like hospitals and nursing homes and gotten them to pull in the same direction on end-of-life care counseling. “The way to get real change,” McMahon says, “is to get the groups representing the facilities that are required to do this to buy in.”

But working through health-care professionals and health-care facilities to promote end-of-life care counseling is not getting a huge amount of traction in other states. More promising is a rapidly growing end-of-life care phenomenon known as “physician orders for life-sustaining treatment,” or POLST.

The basic idea behind POLST is to give anyone who is judged to have less than a year to live the chance to set out very detailed directions about what sort of care they want or don’t want. “It’s basically a DNR on steroids,” says Carney of the Center for Practical Bioethics. But unlike a “do not resuscitate” order, or an advance directive, POLST forms are formal physician’s orders worked out in advance with a patient or a patient’s advocate. “We have found POLST to be a very successful way to convey immediately actionable medical care based on patients’ wishes,” says Dr. Alvin Moss, director of the Bioethics Program at the West Virginia University School of Medicine.

The other advantage of POLST, at least when done thoroughly, is that it is instantly accessible to everyone from EMTs in an ambulance to doctors in an emergency room. That’s the case in Oregon, where the state maintains a rapidly expanding registry of more than 100,000 POLSTs available online 24 hours a day, seven days a week. There are currently five states with POLST registries, although as electronic medical records systems evolve and grow, POLSTs are likely to become part of any patient’s instantly accessible online record.

Given the registry and general knowledge of POLSTs in Oregon (the state implemented its POLST program way back in 1995), there’s been a significant shift in the behavior of both patients and health-care professionals. “There is a huge amount of public empowerment in this,” says Tolle of OHSU, which hosts the Oregon POLST registry. “We’ve seen a major transformation from ‘We didn’t ask, we just intubated,’ to [medical personnel] asking if someone has a POLST form.”

As for the politics of POLST, the death panel insinuation has not materialized. That may be because health professionals involved in the movement learned their lesson during the ACA fight. Now, when a state legislature is considering a POLST bill, there is a concerted effort to get all interests to the table at the very start, including right-to-life and disability rights groups.

In West Virginia, the key to successfully establishing its POLST program was to send a clear message that POLST wasn’t about helping or even coercing patients to forgo care. It’s about patient choice, says Moss, who also serves on a national POLST task force. The right-to-life lobby agreed to stay neutral on the bill, he says, because they understood that POLSTs were optional. “If a person does want to fill one out, they can say they want CPR, they want a feeding tube. They can have all that.”

The notion of patient control and choice and its two-way nature seems to be fundamental to why POLST has not been as controversial as other laws related to end-of-life care.

Working in its favor, says West Virginia state Sen. Ron Stollings, is the simple reality that it’s directly in line with patients’ wishes. “It’s what my patients want,” says Stollings, a general practice physician who sees a large percentage of elderly clients. “They want high-touch, low-tech. They want meals on wheels and in-home services. They want to get out to the grocery store if they can. They don’t want CAT scans and MRIs.”

More than 14 states now have some form of a POLST system in place, with another 25 states considering programs. Typically, POLST laws and regulations also include language granting caregivers immunity if they follow a POLST form. In registering, POLST participants almost uniformly agree that the form be accessible to all health-care providers, which gets around the privacy concerns of Health Insurance Portability and Accountability Act regulations.

But POLST’s low profile cuts both ways. While it is off the radar of the political social wars, the lack of awareness of or information about POLST is considerable, which means in some states it is nowhere near to living up to its potential. “The process is a slow one,” says David Leven with Compassion & Choices of New York (the state passed a POLST law in 2009). “That’s unfortunate because studies show that when there is a POLST document it’s much more likely that a patient’s wishes will be honored and they will have less aggressive interventions, which makes for a higher quality of life. Right now there’s a major deficit in knowledge.”

The steep learning curve aside, the ultimate promise of POLST is significant. So far, the programs haven’t elicited the strong opposition that arrives with assisted suicide bills. That difference is on full display right now in Massachusetts. There, a bitter, high-profile battle is raging over a ballot initiative to allow terminally ill patients to give themselves a lethal dose of drugs. (Three other states have such laws in place: Montana, Oregon and Washington.)

Meanwhile, Massachusetts is also pursuing a POLST initiative. As long as it hews to hospice and palliative care discussions and doesn’t wander into the territory of assisted suicide, it isn’t a problem with right-to-life interests in the state, says Anne Fox, president of Massachusetts Citizens for Life.

The end-of-life care movement is clearly gathering steam. Public officials and the medical community alike are discussing the topic in growing numbers. With good reason: An aging baby boom cohort and their families are much more tuned in to the subject than previous generations.

Ultimately, the drive toward a more rational, reasoned and patient-centered approach to dying is pretty straightforward. “We are,” says West Virginia’s Moss, “spending lots of money on people who die within a year, in settings they don’t like, getting treatments they don’t want.”

The Wisconsin Medical Society is launching a statewide initiative to make advance care planning – including the sensitive and often difficult conversations about end-of-life care – a standard part of patient care.

The initiative – Honoring Choices Wisconsin – is modeled after a communitywide initiative in La Crosse that has drawn national attention as well as a similar initiative by the Twin Cities Medical Society in Minnesota.

The goal is for the state’s health systems eventually to have people on staff trained to help patients understand and document the care they would want if they could not make decisions themselves.

“We know the tragedy of not having these conversations,” said Tim Bartholow, chief medical officer of the Wisconsin Medical Society.

The initiative will begin with a pilot project involving five health systems, including ProHealth Care, as well as the William S. Middleton Memorial Veterans Hospital in Madison and other organizations.

Respecting Choices, an outgrowth of the initiative in La Crosse, will provide the training for the participating health systems and organizations.

The nonprofit organization, part of Gundersen Lutheran Medical Foundation, had the same role in the Twin Cities Medical Society’s initiative and has worked with health systems and communities throughout the country.

“Some of the best work in the world is being done in La Crosse,” said John Maycroft, policy analyst at the Wisconsin Medical Society.

Respecting Choices will train nurses, social workers, chaplains and others who will help people with advance care planning.

The Wisconsin Medical Society hopes the sessions will lead to more people completing advance directives – written instructions on what care should be provided if they cannot make decisions on their own.

The participants in the initiative will use a standard form developed in La Crosse.

Other goals include increasing physicians’ understanding of advance care planning, hospice and palliative care, and improving end-of-life care.

Let wishes be known

The initiative could result in fewer patients dying in intensive care units and increased use of hospice care, although Maycroft stressed that this depends on patients’ wishes.

“This is not ever about pushing one particular decision over another,” he said. “We know that most people want less medical care at the end of life. However, some people want more.”

The idea is simply for patients to receive the care they want and for their wishes to be known, potentially sparing family members from agonizing decisions.

Advances in medical technology have enabled doctors to keep patients alive, said Bartholow, a family practice physician. But that is not always the same as providing better care.

“Medicine as a whole has been a little slow to the game on this,” he said.

The Wisconsin Medical Society, which has about 12,500 of the state’s doctors as members, has been working on the initiative for more than a year. It estimates the pilot project will cost $250,000 the first year.

Training will begin this month and the pilot project is scheduled to begin in March 2013.

The Wisconsin Medical Society also plans an ambitious community outreach program similar to one launched by the Twin Cities Medical Society.

Many take part

Last year, 14,000 advanced care planning sessions were held in Minnesota and almost 16,000 advance directives were recorded in patients’ electronic health records, said Sue Schettle, chief executive officer of the Twin Cities Medical Society.

The state now has more than 800 people trained as “facilitators” to help patients with advance care planning.

“It was the Twin City model that really showed how this could be done on a large scale,” Maycroft said.

ProHealth is the only health care system in the Milwaukee area participating in the pilot project, although Columbia St. Mary’s, which already has put an emphasis on advance care planning, may have an advisory role in the initiative.

Community Care, which oversees programs for people who are disabled and for the frail elderly, also is participating in the pilot project. Froedtert Health tentatively plans to participate in the next phase of the pilot project.

“Morally and ethically, it is the right thing to do,” said Patricia Starr, palliative care coordinator for ProHealth.

Nurses, doctors and other health care workers have seen what can happen when people have not done advance care planning, she said.

“That is something you don’t forget because it is very, very distressing for families,” said Starr, a registered nurse. “It causes a lot of discord.”

The Business Health Care Group, an employer coalition in southeastern Wisconsin, plans to support the initiative, said Dianne Kiehl, its executive director.

“There is nothing bad that comes out of it,” Kiehl said.

The health systems and organizations participating in the initiative will offer the program in at least one clinic, department or other site.

The project will track the number of patients offered help with advance care planning, the number of counseling sessions or “conversations” held with patients, and the number of new advance directives entered into patients’ medical records.

The participants also must agree to share what they learn, take part in monthly meetings, and to track and report their results.

The long-term goal is for the project to become a statewide initiative.

Honoring Choices Wisconsin will focus initially on just the first stage of advance care planning.

“What we’ve learned in La Crosse is end-of-life planning is a complex process and best done in stages,” said Bernard “Bud” Hammes, director of Respecting Choices.

“This is really a series of conversations,” he added. “And the conversations are needed over time because, as people age and as they develop serious illnesses over time, they need to rethink what is important.”

How to join

People and organizations interested in participating in the project can contact John Maycroft, policy analyst for the Wisconsin Medical Society, at john.maycroft@wismed.org.