palliative care

QUALITY: Dying Well Beats Dying Badly. And Expensively

Joanne Kenen — Fri, 20 Nov 2009 14:01:00 -0500

As we've written a lot on end of life care, we notice when others do the same. NPR's Joseph Shapiro this week reported on La Crosse, WI where 96 percent of the adults who die have an advanced directive. That extraordinarily high figure arises from the innovations and commitment from Gundersen Lutheran hospital. Careful, sensitive discussions by trained doctors and nurses -- they use a 12 page guide -- is time consuming. Medicare doesn't reimburse them for that time, A provision in the House health care bill would change that -- the provision that was caricaturized as a "death panel." The Senate bill doesn't contain it.

Shapiro's thoughtful piece shows many aspects of end of life decision-making, but one element we liked in particular was that it shows these decisions are not static. People can reflect, and can change. That's the beauty of advanced directives or advanced care planning. Joe Hauser, one of the patients profiled in the NPR piece, initially declined dialysis for his failing kidneys. His wife Janice begged him to reconsider. So he gathered more information and spoke to a nurse. He and his wife were trying to decide whether to visit a dialysis center, and a support group. He learned that if he tried dialysis, he would always have the option of stopping. When Shapiro last spoke to him, Hauser was still leaning against dialysis. But he wasn't sure:

There's a surprise. He extends his left arm across the kitchen table. He wants to show what he calls his "buzzer." It's a spot at his wrist where you can feel the vibration from an artery and a vein that a surgeon has joined together.

It turns out that Joe Hauser's decided to be ready, if he changes his mind. And if he decides he wants dialysis, then the needle of the dialysis machine can slip right in to that spot -- the fistula -- that the surgeon has prepared at his wrist.

We should point out that the Washington Post.'s Alec MacGillis also had a fine story about LaCrosse earlier this fall. Don't think we linked to it at the time. MacGillis looked at both the economics of end of life care, and some of the local cultural traits of La Crosse. The population is full of people of German or Scandinavian descent who seem to have a pretty pragmatic view of aging and dying. And the local doctors and nurses have a culture, too, that values communicating with patients, and respecting their wishes. People in LaCrosse spend far fewer days in the hospital in their final weeks and months of life than people elsewhere in the country. Not because the Wisconsin community doesn't want to spend the money, but because that's what the people who live there, and die there, choose.

This coming Sunday (Nov 22) 60 Minutes will do a piece on end of life, featuring our occasional guest blogger Dr. Ira Byock (read his posts here and here). The short preview on the CBS website focuses a lot on costs; we suspect the televised segment will tell a moving story about quality of care, and patient choice. Because we too have accompanied Dr. Byock in that ICU, and sat in on his team meetings, and we know that quality -- and care -- is what motivates them.

One last relevant link -- Oregon Democrat Rep. Earl Blumenauer, who authored the House provision on end of life conversations, wrote an op-ed in the New York Times this week, describing how a measure that had long and deep bipartisan roots turned into political poison: "The battle lines were being drawn. Little did I know how deep the trenches would be dug, nor how truth would be one of the first, and most obvious, casualties." Live and learn.

QUALITY: A Good Beginning for Better Endings

Joanne Kenen — Fri, 06 Nov 2009 16:02:00 -0500

After all the sound and fury of last August, we're pleasantly surprised that the right hasn't risen again with all sorts of horror stories about the resurrection, so to speak, of the "death panels." Maybe because all that fear-mongering was finally discredited. Maybe we are finally getting just a little bit smarter.

The inevitable focus on the politics of health reform, and the disproportionate amount of attention paid to the public plan, sometimes obscures the many ways that the House and the Senate health plans are ambitious. Not perfect. Ambitious. I've heard experts, people I like and respect, say the legislation does "nothing" to advance the cause of quality of end of life care in America. They are wrong. The House and Senate bill each contain measures that would advance that cause -- not fix it completely, far from it, but they will take us important steps in the right direction. It's too soon to know which of these measures - if any -- will survive a final melding of House and Senate legislation. But let's look at them here because, except for the end of life consults which got way too much of the wrong kind of attention, they haven't gotten adequate attention. In an accompanying guest post. Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in New Hampshire, talks about what these changes can mean for his patients and their families.

One of the most damaging myths, or at least misunderstandings, in what passes for our national discourse about health policy is that our culture (and too often our doctors) have trouble talking about end of life care. And when we do talk about it, we don't always know what we're talking about. That confusion in turn fueled the "death panel" chaos of last summer.

An advanced directive -- whether a "living will," a health care proxy or a Physician Order for Life Sustaining Treatment -- does not mean "pull the plug." It does not constitute a license for rationing. It does not obligate you to "give up." It is not irrevocable.

An advanced directive is a tool. Properly used, it is a tool that helps you decide how you want to live out your final days, weeks or maybe even months. It is a tool that helps your doctors know what your wishes are so they can respect them. It is a tool that lets your family know what you want, so they too can respect your values and wishes, and avoid the anguished second-guessing and potential family conflict that ensues when people don't know or can't agree on what is best for an incapacitated loved one. If you want aggressive high tech care, a ventilator and a feeding tube and all that is offered in an advanced ICU, you can state that. If you want a DNR you can state that. And if you want something in between those options, you can say that too. (And we do so wish that the move to change the terminology eventually catches on, so that instead of Do Not Resuscitate, or DNR, we talk about Allow a Natural Death, or AND).

The House kept in its bill the VOLUNTARY advanced directive consult provision.(The word VOLUNTARY appears at least five times.) Basically, this means that Medicare will reimburse doctors for taking the time to talk to an elderly patient about what he or she may face medically and how he or she wants to confront it. Right now, there are all sorts of built-in disincentives -- cultural, emotional, legal and yes financial -- against having that conversation. The incentives lie in the other direction: Doctors, and ERS and ICUs are all reimbursed for giving you the aggressive care, and aggressive care is often the default form of care. Maybe our system should make sure you want it.

In addition, the House bill (Section 240) requires health plans in the new insurance exchanges make available to beneficiaries information about end of life planning and the option (Repeat after me: The Option. Not the requirement. The Option) to complete an advance directive or, in accordance with state law, a Physician-Order for Life-Sustaining Treatment (Not Life Terminating Treatment. You can repeat that a few times too.) The bill explicitly states this "shall not promote suicide, assisted suicide, euthanasia, or mercy killing." It also explicitly states that the provision "shall not presume the withdrawal of treatment and shall include end-of-life of life planning information that includes options to maintain all or most medical interventions."

The Senate left that out of the Finance bill. But the Senate bill does incorporate some -- not all -- of what's been on the wish list of hospice and palliative care doctors and nurses and social workers and chaplains for years. For instance, a number of states have been individually seeking Medicaid waivers so that seriously ill children can get hospice for 12 months instead of six -- and that they can also get concurrent, curative care. In other words, as a parent, you don't have to choose between say, chemotherapy, and all the support and symptom management and family assistance of hospice. The Finance bill would wipe out that lengthy, cumbersome, bureaucrat, financially-restrictive waiver process. All seriously ill children in Medicaid in any state could get concurrent curative and hospice care. It isn't that expensive, and it is so badly needed.

And it's not only kids who benefit. The Finance bill sets up a 26-site hospice concurrent care demonstration project in Medicare, so adults too in these test programs can have both curative and hospice care. Some earlier tests and research suggests that this isn't just going to improve the quality of care for people with advanced and life-threatening illnesses, it's actually cost effective. Given a better and gentler continuum of care, without having to make the stark either/or choice of hospice, people often end up gradually shifting the balance as their disease progresses. It is their choice. But their choice is often less aggressive care toward the end.

The concurrent care model, says Jon Keyserling, vice president of public policy and communication at the National Hospice and Palliative Care Organization, "lets you meet patients where they are." The NHPCO and other trade and advocacy groups have a longer list of programs they'd like tested, but Keyserling noted that legislation can be monumental or incremental -- and in some ways, health reform 2009 is both. The sweep of the whole bill is monumental; some components are incremental. But they are a start, and they can be built upon.

The House and/or the two Senate bills do include numerous provisions that have the potential to improve care for seriously ill people (and even nibble around the edge of the long-term care crisis -- which isn't addressed head-on by the current health reform bills). This post is long enough, so we won't go into detail here. But the bills include things like advanced medical homes for people with chronic disease, iniatives to reduce hospital readmissions, bundled payments, transitional care benefits (paying hospitals to do a better job of moving a patient from one care setting to another), assorted quality measurements, pilot programs to improve home-based (as opposed to institutional) care, even a new research initiative on undertreatment of pain. All these steps, whether they survive in a final bill this year or become part of the "building on" agenda for the future, mean paying attention to, and talking about, and doing something about, the needs of the old, the frail, the seriously ill and the vulnerable among us. Our grandparents. Our parents. And someday, ourselves. It's the one thing we all have in common.

HEALTH CARE: Time for a Serious Discussion

Health Policy — Fri, 06 Nov 2009 15:06:00 -0500

We just posted on some of the measures within the House and Senate bills that may help lead us to improved care for people at the end of life. Here, Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., returns as a guest poster to tell us what it all means for his patients -- and the doctors who treat them. Byock, the author of Dying Well, has written for us before about the need to think more broadly about what kind of changes we need in our health care system -- and our communities -- to do a better job of caring for sick and frail people trying to get by in their homes.

It's back. The provision that ignited histrionic accusations of Democratic Death Panels and a Newsweek cover about Killing Granny has been resurrected, (so to speak) tucked away on page 641 of H.R. 3962, the House's Affordable Health Care for America Act. Section 1233 would reimburse doctors for a voluntary discussion with patients about their preferences for care at the end of life. Over the summer, Chairman Max Baucus excluded such a provision from the Senate Finance Committee's health reform bill at insistence of ranking Republican, Sen. Charles Grassley. This made little sense then, and even less now that bipartisanship has collapsed.

As I scanned this 1990 page legislation, I thought of a Sarah (a pseudonym), a patient, who is a granny herself. Sarah is generally fit, the result of a healthy diet and a habit of walking five or more miles daily. So, despite her 82 years, it was a shock to her to be diagnosed with colon cancer with a metastatic tumor in her liver. When I saw her in clinic and asked if she had an advance directive, she protested, "But the oncologist said he could cure me!" True, with a combination of chemotherapy and surgery, Sarah has a chance of being cured. Still, it is fair to describe her condition as life-threatening. Yet, neither her internist, nor the oncologist, gastroenterologist, surgeon, or radiation oncologist she has seen since being diagnosed has brought the subject up.

I explained that I expected that she would do well with treatment, but that at our cancer center, we routinely ask all our patients about advance directives. We believe that discussing people's values and treatment preferences and, at a minimum, knowing who they want to speak for them if they become critically ill are components of good medical care. I hoped to reassure her by sharing that I have an advance directive. So does every adult in my family.

Recently, I introduced this topic in a medical school class on palliative care and clinical ethics. In addition to recounting my discussion with Sarah, I told the students that my two daughters, who are in their late twenties, also have advance directives. A few of the students chuckled nervously. Young adults, after all, tend to think they are invincible. Medical students are no exception.

Responding to the chuckles, I pointed out that history shows otherwise. In 2005, we all watched the Terri Schiavo case. I can't bear the thought of one of my daughters being critically ill. The only thing worse would be having a judge or elected officials meddle in our family decisions and her treatment. So when my daughters asked what I wanted for Father's Day that spring, I requested that each of them fill out an advance directive.

That got more laughs in the lecture hall. Yet this is deadly serious. The very cases that have framed American ethics and law on medical decision-making -- Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo -- were all young women in apparently good health. You don't have to be dying for these discussions to matter. You just have to be mortal.

Without an advance directive, even society's most powerful members could get dragged into a drawn out legal mess at the end of their lives. Under state law in New Hampshire, where I live and practice, if Sen. Baucus or Sen. Grassley were to suffer critical injuries in an accident, their families would not have statutory authority to speak for them -- unless an advance directive on record specifically gave them that power. Otherwise, a court, the New Hampshire legislature -- or as in the Schiavo case, the U.S. Congress -- might weigh in on whether and how long life support should be maintained.

I teach physicians-in-training that it is their responsibility to talk about advance directives with all adult patients, no matter whether these conversations are reimbursable or not. Yes, it can be uncomfortable for both doctor and patient. That's no excuse. I wonder if the senators' doctors have raised the issue with them during routine health visits. If not, why not? It is time doctors and legislators faced this issue like responsible professionals.

QUALITY: What Not To Overlook in a Health Care Bill

Joanne Kenen — Wed, 16 Sep 2009 20:06:00 -0400

With Baucus's bill now out, there will be ample and we expect acrimonious debate about subsidy levels and affordability, the mechanics of the insurance exchange, the financing, and of course the lack of a public plan option. (We wonder if the recent survey showing how popular the public plan is among US doctors will have a discernible impact.)

But we wanted to point out some of the less controversial measures (if there is such a thing as uncontroversial after this summer) that touch on some of the topics we've been writing about that aim, simply, to keep us healthy, or to reduce avoidable complications and deterioration when we get sick. As Sen. Baucus himself put it, steps toward changing how we deliver and pay for health care are often overlooked in the national debate but can have a "transformative" effect on enhancing quality while holding down costs.

Preventive care will get more emphasis, and Medicare patients won't have a co-pay for certain screening tests and preventive services proven to be effective. Medicare patients would also get a "wellness visit" annually (which isn't covered now.)

Hospitals with high rates of avoidable hospital-acquired infections and certain errors will face penalties.

New ways of delivering more coordinated care will be tested and/or introduced. These include patient-centered medical homes (including for Medicaid beneficiaries with one or more chronic diseases), accountable care organizations, "bundled payments" (to include acute as well as post-acute care). Payments to doctors and hospitals will be based, in part, on quality of care over quantity of procedures. New models will be tested to provide more coordinated and home-based care for chronic disease, including more care and monitoring for patients in their own homes.

The bill incudes several approaches to reducing unnecessarily rehospitalizations, including a renewed focus on successfully transitioning patients from the hospital back into a community setting, making sure, for instance, that they get in to see their own doctor quickly after a hospitalization. (You would think this would be part of routine care. It is not.)

There is also (on page 53) a small but important provision expanding palliative care to dying children under Medicaid, so that they can basically get hospice-type care at the same time they can still be getting "disease-modifying" treatments aimed at slowing down a terminal illness and prolonging life. Quite a few states had been trying to do this on a one-by-one waiver basis, this national approach woudl be far less cumbersome.

The Finance draft is only one step on the road to health reform -- albeit an important one. It will go through a lot of changes, and lots of compromises as it goes through committee, gets melded first with the Senate HELP bill and then with the House version. But as the process unfolds -- and we suspect, at times, explodes -- it's important to remember that there's a lot more to health reform than fighting about mandates, money and markets.

HEALTH POLITICS: What Advance Planning is All About

Joanne Kenen — Fri, 14 Aug 2009 19:45:00 -0400

Dr. Diane Meier, one of the nation's leading voices for palliative care writes about what really happens in end of life discussions on RWJF's User's Guide to the Health Reform Galaxy blog. Diane notes that "end of life" is a misnomer -- many people live for a number of years with chronic disease, and we don't really know when someone will bounce back from a crisis, when they will decline gradually, when they will die. It's a delicate conversation -- for which doctors currently are not well compensated. But it's a crucial conversation that can guide patients, doctors and families into making sure that people get the treatment they want when they can no longer speak for themselves. And if their wishes are for aggressive, do-everything-you can treatment, that too counts as an advanced directive.

My patients want to know that their goals, values and hopes will be the primary considerations when healthcare decisions need to be made. They are frustrated by how little time most of their doctors can devote to talking with them and how rushed these encounters have become. They hesitate to ask questions about their illness because they are afraid to take any extra time that might burden their busy doctor, who is always harried, always behind, and always has a waiting room full of other patients...

This is what these conversations are like in the real world of doctor and patient. So that the patient's voice and values remain front and center when serious medical problems arise, I ask them the following question: "Who would you trust to help me make health care decisions on your behalf if you were unable to make your own decisions? This person can be a family member but does not have to be, and they will only be asked to represent you if and when you are unable to represent yourself." Most of my patients appoint one or more of their children, or their spouse, but some prefer to spare their family this burden of responsibility and appoint a friend or other counselor.

Secondly, although most of us really do want all the facts about what is happening to our bodies, some of my patients prefer to sustain a certain level of denial. That's fine, but I need to know how they would like me to handle information and shared decision-making. I say, "Some of my patients like to know all the details about their medical condition and their treatment options, and others prefer a more general outline, or ask that I discuss treatment planning with a family member. Which kind of person are you?" Roughly 90 percent of my patients respond that they do want to know everything, but a substantial minority do not. If I try to force unwanted information on this group of patients, they will no longer trust me and are unlikely to feel safe in my care. Hence, I will honor their request that I confer with their family when medical decisions need to be made, though I will check in frequently to see if they are ready to learn more as time passes.

Lastly, I ask my patients one more, very important, question. "If you ever got so sick that your brain was permanently injured to the point where you could no longer recognize or interact with your loved ones -- the kind of condition that Terri Schiavo had or what typically happens in the late stages of Alzheimers' dementia -- in this situation some of my patients say they would want care focused only on assuring their comfort and not on prolonging their existence in this state; but others tell me they would want everything possible done to prolong their existence no matter what the quality of their mental functions or ability to connect with others. Which kind of person are you?"

Again, the clear majority opt for comfort measures when they reach this state of loss of self. But a consistent minority are either so fearful of death or so convinced that a miracle will restore them to health that they tell me to "do everything to keep me going, no matter what." Whatever they say, I write down in the medical record as a guide for when (not if) serious medical problems arise. The patient's wishes and goals are my guide as I work with other doctors and family members to try to come to the best plan of care. Whenever possible and with the patient's permission, we have these conversations together with family and surrogate decision makers. That way, when the family decision makers are faced with wrenching and painful medical choices for a very ill loved one, as they inevitably will, they know what the patient's wishes are, and they take great comfort in their ability to honor them.

...Of course, these conversations are not mandatory, but I have yet to encounter a patient who is not tremendously relieved by the chance to talk out some of their deepest worries and fears about what might happen to them in the future and how we will work together to face these situations. I have this kind of discussion with all my patients, early in my relationship with them, just as I discuss getting a flu shot, or wearing seat belts, or using sun block outside. It is a routine part of good primary care. It is not rationing. It is not euthanasia. It is not a death panel. These are outright lies.

HEALTH CARE: Beyond the Rhetoric -- How Palliative Care Helps Kids

Joanne Kenen — Thu, 13 Aug 2009 19:53:00 -0400

Lots of heat out there about palliative and end of life care (they are not synonyms) but not a lot of light. Carol Ann Campbell on Kaiser Health News today takes a look at what palliative care can do for seriously ill children and their families, and the obstacles to getting it to them. I've reported on some of these same programs and obstacles before (here and here) as well as the slowly expanding access cancer patients -- including some who are very sick but not necessarily dying -- have to palliative care as they endure painful symptoms, difficult treatments, and complex decisions. As the political hue and cry shows, these are difficult topics to talk about in our culture. Too often, people equate palliative care with "pulling the plug." In reality, palliative care teams (which often include chaplains and social workers, as well as doctors and nurses) treat pain, control symptoms, and help patients and their families with the physical, practical, emotional and spiritual challenges of serious illness.

HEALTH REFORM: When a Maverick Provokes a Non-Maverick. Who Then Gets Mad at the White House

Joanne Kenen — Tue, 11 Aug 2009 21:56:00 -0400

Paul Testa's post about Obama's town hall meeting in New Hampshire mentioned Ezra Klein's interview with Sen. Johnny Isakson about advanced directives. We thought it was worth sharing more of Isakson's comments. Isakson's a conservative Republican from Georgia, and not one of those mavericky independent conservatives. But he says he can't figure out how a bipartisan initiative that encourages people to plan for (and share with their family) what kind of care they want if they are critically ill and incapacitated has become a partisan fight about government-run euthanasia. We were just about to post this when -- proving our point about his nonmaverickness -- we checked his website and saw his statement "denouncing" the White House for complementing him...Excerpts below:

First the interview:

How did this become a question of euthanasia?

I have no idea. I understand -- and you have to check this out -- I just had a phone call where someone said Sarah Palin's web site had talked about the House bill having death panels on it where people would be euthanized. How someone could take an end of life directive or a living will as that is nuts. You're putting the authority in the individual rather than the government. I don't know how that got so mixed up.

You're saying that this is not a question of government. It's for individuals.

It empowers you to be able to make decisions at a difficult time rather than having the government making them for you.

The policy here as I understand it is that Medicare would cover a counseling session with your doctor on end-of-life options.

Correct. And it's a voluntary deal.

Are there other costs? Parts of it I'm missing?

No. The problem you got is that there's so much swirling around about health care and people are taking bits and pieces out of this. This was thoroughly debated in the Senate committee. It's voluntary. Every state in America has an end-of-life directive or durable power of attorney provision. For the peace of mind of your children and your spouse as well as the comfort of knowing the government won't make these decisions, it's a very popular thing. Just not everybody's aware of it.

Then his office put out a statement: "Isakson Denounces White House Comments Connecting Him
To Terribly Flawed House Health Care Bill." The version he supported in the Senate HELP committee, he says, "empowers the individual," but those House Democrats incentivized doctors...

HEALTH POLITICS: Polling is Such Sweet Sorrow

Joanne Kenen — Thu, 06 Aug 2009 21:59:00 -0400

Older Americans are a lot more apprehensive about health reform than younger ones, according to a CNN/Opinion Research Corp. poll released this week. That's highly understandable given all the outrageous rhetoric out there trying to convince people that health reform would be tantamount to Henry VI shouting, "First, kill all the Grannies."

Overall, the poll showed that support for President Obama's health reform has actually held pretty stable -- despite the stepped up and shrill campaign against it. In late June, 51 percent backed Obama on health care, 45 opposed. A month later, it was 50 percent in favor, and a stable 45 opposed. And a large majority -- 77 percent -- agreed it was necessary to make "major structural changes" to U.S. health system to make sure everyone has health insurance, and a similar number -- 74 percent -- said major structural changes were necessary to reduce costs.

But the poll also found that a majority of those over age 50 opposed the president's approach, while a majority under 50 approved.

We have written on the rhetoric surrounding end of life care -- in fact, we were among the first blogs to pick up on that emerging theme from the right. The AARP has also been doing its part to reassure older people. Health reform, particularly the provisions in the House bill that will pay a doctor to spend the time it takes to have a careful and sensitive discussion with an older person about goals of care, won't take away choices, the AARP said. To the contrary, it "would actually help empower individuals and doctors to make their own choices on end-of-life care."

As AARP executive vice president John Rother said recently:

Facing a terminal disease or debilitating accident, some people will choose to take every possible life-saving measure in the hopes that treatment or even a cure will allow them more time with their families. Others will decide that additional treatment would impose too great a burden -- emotional, physical and otherwise -- on themselves and their families, declining extraordinary measures and instead choosing care to manage their discomfort. Either way, it should be their choice.

This measure would not only help people make the best decisions for themselves, but also better ensure that their wishes are followed.

To suggest otherwise is a gross, and even cruel, distortion -- especially for any family that has been forced to make the difficult decisions on care for loved ones approaching the end of their lives.

HEALTH CARE: Quality Care for the Dying

Joanne Kenen — Fri, 24 Jul 2009 16:32:00 -0400

You may have seen the latest message tirade from the right -- health reform equals rationing equals hospice equals euthanasia.

Give us a break.

The House bill would encourage advanced planning. It would not mean that "old people could be visited in their homes and essentially be told, 'all right, sweetie, you have had a good life.'" It would not send government bureaucrats into homes to counsel seniors about how to cut their life short. It would not "start us down a treacherous path toward government-encouraged euthanasia."

Republicans talk about choice, and about patient autonomy and decision-making. Advanced directives encourage, and enable, informed choices. They encourage, and enable, conversations between patients and doctors. They encourage and enable conversations in families. They make it more likely that choices are respected and carried out -- which is not always easy in a medical system where the default is usually to do more and more, and in a culture where the default is often to avoid thinking about or talking about death and dying.

An advanced directive does not mean you are choosing not to get care. You are choosing what kind of care you want to get. If you want aggressive, high-tech care in an ICU, you can say that. If you want a feeding tube and a ventilator, you can say that (and our system certainly is geared up to give it to you). If you want more palliative care, you can say that. If you want hospice, you can have it (Medicare has covered it for more than 25 years). But you don't have to have hospice, and health reform isn't going to change that.

There are a lot of different approaches to advanced directives (Five Wishes, POLST, health-care proxies to name some) but their purpose is to help old, sick, or vulnerable people, who may not be able to speak for themselves anymore, to live out their days according to their wishes, beliefs, and values.

No one would say every patient and family has a perfect, peaceful, rose-colored experience in hospice. I personally have written about some of the quality issues in end of life care and some of the limitations of hospice. But certainly we can't say that people have perfect peaceful experiences dying in ICU units or nursing homes either. Particularly if they wanted to die at home.

Ironically, Laura Ingraham, who, while guest-hosting the O'Reilly Factor was critical of provisions in the House bill addressing end of life issues, has Capital Hospice on her website as one of her favorite charities. No reason it shouldn't be. Hospice is one of the most holistic -- in the sense of complete -- aspects of our health care system. Hospice doctors, nurses, social workers, volunteers, home aides and chaplains help patients and their families with pain and symptoms, with the challenging tasks of at home-care giving, and with spiritual and emotional support during the illness, the death, and the period of bereavement.

Here's what the Hospice Foundation of America said this week in an unusual press release (they don't usually respond to political controversy.)

In yesterday's segment on healthcare reform, your guest host Laura Ingraham addressed the requirement in the current healthcare bill that doctors periodically discuss advanced directives and end-of-life care options (including hospice care) with their patients. While doing so, she indirectly gave a startling and misleading characterization of hospice care: "Now I find that to be creepy, for the president of the United States to be saying basically, we hope more people -- you old people, you get sick, you know, we encourage you to look at hospices... Go die. Go to a hospice and die."

Hospice care is apolitical and Hospice Foundation of America is a nonpartisan public charity. Thus, we normally stay far away from political debates. However, Ms. Ingraham's comments portraying hospice as merely a place to die and her suggestion that hospice advocates seek to shorten life are so wrong and so harmful that they must be addressed.

Hospice is not a place "to go to die" and those who support hospice do not wish death on the infirmed. As a philosophy of care, hospice seeks to add quality to the last weeks and months of life for those suffering from incurable illness. More than a third of Americans who die every year die in the care of hospice. The people who choose hospice do not choose to give up on life. Instead, they wish to spend their final moments at home with their loved ones, aided by doctors and nurses who specialize in pain management and supported by counselors and clergy who are experts in pastoral care.

The AARP, whose mission is not exactly shrinking the rolls of our elderly, also weighed in. National spokesman Jim Dau said of the drive to encourage advanced planning:

It is a misleading and cruel interpretation of a humane measure that actually has bipartisan support. This measure would allow Medicare to compensate doctors for discussing with their patients the most difficult care choices -- those that happen at the end of life. It would actually empower individuals to make the best decisions for themselves and their families, and better ensure that their wishes will be followed.

The American Cancer Society, which pushes for research and access to life-saving and life-prolonging care, has also made pain management, decision-making and quality end of life a cornerstone of its health reform agenda. They want standards and quality and good payment for the time-consuming task of providing high quality palliative care and end of life care.

We don't know when someone is going to die; we do know when someone is sick. We need to do a better job of creating a continuum of care, where patients can get palliative care, pain and symptom management and emotional support, earlier in the course of a serious disease without giving up curative treatment. We need hospice, for those who choose it. We need a health care system that covers all these needs, for all patients and families. And we need a health care system that encourages and enables people to talk about their needs and their preferences, and get them fulfilled.

(PS. Rep. Earl Blumenauer wrote about the end of life rhetoric at the Huffington Post, and he also has a Myths and Facts sheet on his website about the House bill's end of life provisions.)

HEALTH CARE: Obama's Grandmother and the National Conversation

Joanne Kenen — Fri, 01 May 2009 20:31:00 -0400

President Obama speaks about his grandmother's death and the questions it raises about end of life care in an interview published in this weekend's New York Times Magazine. It's a thoughtful and frank public airing of a painful topic. The Times' Peter Baker wrote a related article linking the president's comments to the politics of health reform. The questions Baker raises about scarce resources and decision-making were perfectly legitimate, given the political moment we are in, but they aren't the questions that came to my mind as I read the piece. (On the web, the relevant portion of the magazine interview starts at the end of page 4).

The questions I wonder about were why, exactly, did Madelyn Dunham (Obama's grandmother) get hip replacement surgery given that she was suffering from heart disease, terminal cancer and possibly had had a stroke. I'm not talking about the cost, here. I'm talking about whether it was really the best option for her, or whether she was a victim of our procedure-driven "let's do it because we can" medicine. Did she fully understand the risks and implications, not just while she was in surgery but during the recovery? How well did anyone explain other less invasive options? Who—if anyone—was coordinating her care? Were the various specialists (that may have included oncologist, surgeon, cardiologist, orthopedist, hospitalist and/or internist and who knows who else) communicating and how? Was a pain or palliative care specialist consulted?

And above all, was the care she got in keeping with her end of life goals and her personal values? Because if there's one thing the 86-year-old grandmother probably wanted after learning during the campaign that she had terminal cancer was to live long enough to see Barack Obama give that historic victory speech in Chicago on election night—and maybe, if she was lucky, to live long enough to watch him take the oath of office when he became President of the United States. As we all recall, she died less than two days before his victory. We all watched that tear slip down his cheek. The timing made even many of his political opponents grieve for him.

"I don't know how much that hip replacement cost," Mr. Obama said in the interview with David Leonhardt of The Times. "I would have paid out of pocket for that hip replacement, just because she's my grandmother. Whether, sort of in the aggregate, society making those decisions to give my grandmother, or everybody else's aging grandparents or parents, a hip replacement when they're terminally ill is a sustainable model is a very difficult question."

He went on to say: "If somebody told me that my grandmother couldn't have a hip replacement and she had to lie there in misery in the waning days of her life, that would be pretty upsetting."

That's the tragedy. The money was spent. The operation was performed. But it neither extended her life nor enhanced the quality of her life. She began to fail. In about two weeks, she was dead. She lived long enough to cast her absentee ballot. But not to long enough to see it counted.

Obama doesn't want to take the power to make those decisions away from patients and families, to"micromanage the doctor-patient relationship." But he wants better guidance, for our federal health care dollars, and for families facing these hard decisions on their own.

"There is going to have to be a conversation that is guided by doctors, scientists, ethicists," Mr. Obama said. "And then there is going to have to be a very difficult democratic conversation that takes place. It is very difficult to imagine the country making those decisions just through normal political channels. And that's part of why you have to have some independent group that can give you guidance. It's not determinative, but I think has to be able to give you some guidance."

But I think about the other conversations, the conversations that Dunham had after she fell and broke her hip. The doctors said she had three, maybe six, maybe nine months left because of the cancer. The hip replacement surgery carried risk, because she also had heart problems, but the doctors apparently painted a miserable picture of life without the surgery.

Did they explore—adequately—nonsurgical alternatives? I don't know how severe her fracture was, how at risk she was for greater injury, what nonsurgical alternatives were even available to her. (Approaches like traction, I've read, can have risks of their own in some cases if frail elderly patients need to be immobilized). I'm not a doctor so I don't know the clinical answers to this (although I'll email this post to some palliative care experts and geriatricians I know and invite their comments). But I do know that we have ample data showing that expensive interventions at the end of life do not necessarily produce better outcomes. Had Dunham opted to live out her days without the risky surgery or was being "miserable" her only option? Could her pain be controlled? Would she have any mobility? Would living with the injury, for however long she had left, have been better than the pain and trauma of surgery? Research has shown that given a full accounting of all the pros and cons of all the options, patients often opt for the less aggressive, the less interventionist treatment.

Obama's right. These aren't decisions to be made in the course of "normal political channels." But we need both the national conversation that Obama envisioned, and another kind of conversation, a conversation that puts the patient at the center. Surgeons who are invested (emotionally invested, intellectually invested, habitually invested, not just financially invested) in surgery may give the patient and the family a very different perspective than a palliative care physician, or a geriatrician or a family practitioner. But our health care system, today, places a higher value on that surgeon doing his surgery, than those other physicians trying to work through what the patient wants. Patients need data and evidence. They also need wisdom and compassion. Cold-clear facts delivered straight from the heart.