Regrets Too Few To Mention

I went to my prom. I got a good education. I married a good man and divorced him at the right time, in a way that allows us to still be friends. I work at keeping the good friends and letting the bad ones fade away. I have a job I enjoy. I've gone out and seen a lot of the rest of the world. I take risks only after counting the effects they will have on me and those around me. All in all, I believe I pass the "if I were hit by a bus tomorrow, I'll die happy" test. What more could a person want from the years stacking up around them? And yet, at the prime age of 43, I think increasingly about regrets.

Because I'm a hospice volunteer, I spend a lot of time with old people. Dying people. Beyond the discomfort, beyond the anger at terminal illnesses, the greatest cause of emotional upset is often what you and I would call regrets. The estranged daughter, the books never read--or written, the years, now collapsed by hindsight, spent working when they could have been spent with friends or family. The chances not taken, the patterns not broken, the cities never seen, the old feuds left festering. Again and again I hear patients remark with wonder and shock that the years have passed them by too quickly. "In my head I'm still 35," one 80 year old friend told me. "How did I get to be this old?" a patient has asked. "Be careful," she said, "the years go by too quickly to count."

An article by Bronnie Ware, a palliative care worker, has received much attention over the past year. In it she lists the five primary regrets she has heard from her dying patients. They are:

1. I wish I'd had the courage to live a life true to myself, not the life others expected of me.

2. I wish I didn't work so hard.

3. I wish I'd had the courage to express my feelings.

4. I wish I had stayed in touch with my friends.

5. I wish that I had let myself be happier.

It would be easy for me or anyone to shrug off these five wishes. They are vague--what is happiness?--and a little too close to the saccharine platitudes our society substitutes for good, hard thinking. Why worry about it--the regrets slated for the end of my life, or even dying itself--now, when I'm busy living? But I can't shrug them off because, like Ms. Ware, I too hear them said under my patients' breath, see them in the excitement of a dying person when the phone rings, read them in the subtext of comments like, "Of course my daughter can't come visit, she's far too busy with the children."

In an exchange this week with a friend who is caught in a malaise he can't quite diagnose, I noted the above list. He read it and quickly brushed it off as "follow yr heart" stuff. It's all well and good to regret the possible, he noted, but what about regretting the impossible? My reply was that many things we come to regret appear possible only in hindsight.

Years ago, when I lived in California and desperately wanted to write, a lover told me that the most important and difficult thing in life was to be happy. He was a beautiful man from Israel, married, a surfboard maker in the process of trying to earn his keep by making instruments. He was a craftsman, spiritual in what we call that California way, conscientious and thoughtful. I didn't believe him because I was too enamored by all the tales of disturbed and unhappy writers, sacrificing for their craft, dying unhappy and often unpublished. I thought unhappiness and bitter sacrifice were the hallmark of genius, of greatness. Now I know that, in his own way, he was onto something.

Lest those of you who know me suspect I'm going soft, have no fear. There's nothing more difficult, braver or more dangerous than living as you wish. It is in that struggle to live without regrets that justice is grounded. It is in making a good life that we define our rights--to be a woman doctor in the 50s or a tranny flight attendant or a black president or a friend good enough to admit when we're wrong. These happinesses, great or small, are not eccentricities, on the whole, but a daily assertion that we are going to do what we want, as much as is possible, for ourselves and the people around us--because if we don't we will regret it. It is because we don't respect ourselves, our desires, our years, our urges to do something else, our want to be happy, that results in regret.

Joan Didion writes in "On Self-Respect," an essay in Slouching Toward Bethlehem, "Most of our platitudes notwithstanding, self-deception remains the most difficult deception. The tricks that work on others count for nothing in that very well-lit back alley where one keeps assignations with oneself: no winning smiles will do her, no prettily drawn lists of good intentions." That list is the one that my dying patients are reading and rereading their last days. They are tallying up the bad decisions, the wrongs, the complacency, the fears obeyed. Didion continues:

To live without self-respect is to lie awake some night, beyond the reach of warm milk, phenobarbital, and the sleeping hand on the coverlet, counting up the sins of commission and omission, the trusts betrayed, the promises subtly broken, the gifts irrevocably wasted through sloth or cowardice or carelessness. However long we postpone it we eventually lie down alone in that notoriously uncomfortable bed, the one we make ourselves. Whether or not we sleep in it depends, of course, on whether we respect ourselves.

So, perhaps here then is the trick to dying without spending your last years and months consumed by regret in an uncomfortable bed, the trick to not waking up one day to find that your years have run by without notice, to not getting caught in routine and obligation. It is: to remember that the dying comes. For all of us. It's not a tragedy to be avoided, it is a certainty. Easier to face it with "toughness, a kind of moral nerve" which results from owning up to mistakes and braving the ramifications of our decisions.

I have to go now. I have a book to write.

What Do You Know About End of Life, Doctor?

Thaddeus Pope highlights questions 26 and 27 from a recent Regence Foundation poll, "Living Well at the End of Life." Pope keeps a blog about futile care (that you should all read) so the two questions he highlights, below, specifically address removal from curative treatment.

A few other interesting points come out in the poll as well: most patients are ill informed about end of life and palliative care options; patients and their families are more concerned with cost than doctors; and if I'm reading the poll correctly, doctors in Oregon and Washington, states where a state-wide discussion about end of life options has been had -- Death with Dignity laws are in place in both -- agree that quality of life is more important than length of life. Then there's the District of Columbia. 96% of doctors there agreed (compared to 71% nationally, and 85% and 83% in Oregon and Washington respectively).

Another series of questions worth looking at are 29, 30 and 31. Practitioners admit that their education and residencies gave them less exposure to end of life issues than did their practice. Read the entire poll findings here.

26. From your experience, how often do patients and their families reject your recommendation to discontinue curative treatment in favor of palliative care?

66% Regularly / Occasionally

34% Infrequently / Never

27. What reasons have patients and their families given for rejecting your recommendation to discontinue curative treatment in favor of palliative care?

75% Unwillingness to accept that curative treatment was ineffective

74% Disagreement from family members about discontinuing curative treatment

63% Preference for more aggressive curative treatment options

42% Religious hesitations or objections

37% Disagreement with the diagnosis or wanted a second opinion

1% Other

UK Catholic Medical Association Goes After Palliative Care

The "double effect," supported by the American Medical Association, states that a doctor may prescribe pain medication to a dying patient in doses that are lethal because the intention of the doctor is to relieve pain, not end the patient's life. Palliative medicine, the specialty field that focuses on ways to alleviate pain, is often held to account by opponents of assisted suicide because of what fails to be a "bright line" during the process of dying. How much medicine is too much? Who decides? What if the patient has no advanced directive? Would they want to be in pain or to life a few hours or days longer?

A story in Saturday's The Underground, a UK publication on "Pop Culture from a Christian perspective" quotes the president of the UK Catholic Medical Association (and a lot of excerpts from the U.S. based LifeNews) on the unfounded accusation that "mercy killing" is rampant in that country. A clip from the article, below. Note the muddling of end of life issues by confusing palliative care, hospice, assisted suicide and prevalent Catholic teaching on suffering, along with a restatement of the U.S. case of Terri Schiavo:

One reason for the occurrence of euthanasia, Walker told Scottish Catholic Observer, is that “The standards of medical ethics and of interpretation of existing legislation appear to vary greatly around the country and from one organization to the next, even in the same local area.”

Misuse of LCP

Another reason is the misuse of the Liverpool Care Pathway, which was developed in the 1990s at the Marie Curie hospice and royal Liverpool Hospital, so that palliative care for end-of-life patients could improve, the Scottish Catholic Observer said.

The LCP provides criteria that must be followed before ending life-sustaining treatment and applying palliative care, LifeSiteNews said. However, reports have indicated that LCP has been used in the cases of people who were not dying, such as dehydrating someone to death on the grounds of LCP.

Walker said, “If it is used out of context, then it could be used to the detriment of patients e.g. a patient comes into a resuscitation bay, and it is not always clear if a condition is acute and can be treated,” LifeSiteNews reported.

A recent report on crematorium records showed that 23% of all deaths in one city in the U.K. were people put on LCP without any definite diagnosis of their stage of life, LifeSiteNews said.

LifeSiteNews mentions the case of in the U.S. of Terri Schiavo, who was not dying, but who was withheld hydration, as an example of euthanasia. However, if a person is “actively dying and/or is unable to assimilate H & N, [t]hat person is actually dying and the provision of H & N provides little to no benefit and may cause suffering.” In such case, it would not be euthanasia.

What Happens When You Opt Out of Dialysis?

If quality of life is the most important objective for a terminal patient -- and for doctors, caregivers, and family members -- during the end stages of the dying process, how are the pros and cons of dialysis weighed? Will the patient be burdened by dialysis or experience greater discomfort without it?

GeriPal does a good job of examining a new study in the Journal of Pain and Symptom Management that looks at quality of life for those who deny dialysis. It's an intriguing and fairly thorough study that compares renal disease suffers with cancer suffers -- but nonetheless, doesn't give us a clear answer. And such studies may never conclusively do so. The more time I spend watching how we manage emotional and physical pain, the more I better understand how relative pain is. As individual as we are in life and taste, so too are we individual in our definitions of pain. But a study of this sort does go a long way to take dialysis off the path of immediate response for terminal patients and to help us think about what matters: the patient's comfort.

Writes Alex Smith:

What are the clinical implications and remaining questions?

• I usually tell patients and family members that dying of renal failure is "peaceful." I say, "you generally become more and more drowsy, and drift off into a sleep from which you don't wake." This article challenges those words. While I think the final hours and days may resemble that trajectory, the last month as a whole is actually a time of relatively high symptom burden. Clinicians should attend to these symptoms as aggressively as they do for patients with advanced cancer.
• The degree to which these symptoms were due to renal failure or co-morbid conditions is not clear. These patients were not young healthy folks who refused hemodialysis, they refused because they were elderly (mean age at death 81) and had a high burden of chronic conditions like heart failure. Comorbid conditions may be as great a source of suffering in the elderly as the terminal condition (a very Geriatric perspective).
• We still have no randomized controlled trial of hemodialysis vs. no hemodialysis for elderly patients with multiple chronic conditions. We don't know if "conservative management" (no dialysis) is actually associated with a shorter time to death as is widely assumed. We don't know if hemodialysis is associated with a greater burden of suffering, or if (maybe) the trade-offs in terms of reduction in swelling and shortness of breath by using dialysis are worth the hassle, risks, and time spent hooked up to the machine.

Read the whole post at GeriPal.

June 2010 Palliative Care Grand Rounds

This month's host is Bedside Manner!

The Legacy of Jack Kevorkian.

Lewis M. Cohen at HuffPo on the legacy of Jack Kevorkian:

While there's little doubt that he has been a galvanizing figure on both sides of the right to die movement, when it comes to his actual role in alleviating suffering, the reality is far murkier. Kevorkian's legacy has long threatened the ongoing and truly compassionate efforts of hospice and palliative medicine, a medical specialty that focuses on symptom and pain management for the terminally ill. Over the past decade, widespread acceptance of palliative care has contributed to a dramatic change in how people die. Even in America's intensive care units -- our country's most medically aggressive settings -- more than three-quarters of an estimated 400,000 deaths are now preceded by treatment limitation decisions. In 2008, 1.45 million Americans died while making use of hospice services, and according to Dr. Steven Miles, a Professor of Medicine at the Center for Bioethics at the University of Minnesota, fully eighty-five percent -- or approximately two million -- of the 2.4 million deaths occurring annually in the United States medical system are preceded by a structured decision to limit life-sustaining treatment. Throughout the nation it is now both legal and ethical for people to refuse to initiate or to discontinue life-support treatments.

Far from being their leader, palliative care practitioners consider Kevorkian to be a dangerous distraction. Yet despite this disavowal, palliative care is sometimes maligned -- primarily by a coalition of sanctity of life and anti-euthanasia organizations -- because of the legacy of Dr. Death. In the early 1990s, Kevorkian came to the public's attention after retiring from his profession as a pathologist -- a doctor who provided no clinical care, but instead performed autopsies on the dead -- to become a physician-assisted suicide activist. However, in a notorious broadcast of the CBS program, 60 Minutes, Kevorkian showed the world that he had shifted from physician-assisted suicide to active, voluntary euthanasia -- injecting a patient suffering from Lou Gehrig's disease with a fatal combination of three medicines -- a crime for which he received an eleven to twenty year sentence for second-degree murder.

Pardi and Palliative Care.

The New York Times has posted letters to the editor regarding the much-talked-about recent article on Dr. Desiree Pardi, a palliative care practitioner who died of cancer. You can read the letters here.

Slovenia Institutes National Palliative Care Program.

On Thursday the Slovenian government passed a bill that commences a national program on palliative care. From the article by Michael Roberts at Balkans.com:

At present, Slovenia has no palliative care system or specific policy dealing with the issue. As a result of longer life-expectancy and the increasing number of chronic diseases (among the most common being cardiovascular conditions, cancer, chronic pulmonary diseases and diabetes) there is a pressing need for organised palliative care. Research shows that as many as 60 per cent of people at the end of life and 80 per cent of patients with advanced cancer require palliative care. On average, two family members per patient require certain treatment that is encompassed by the palliative care definition.

The main goals of establishing a system of organised comprehensive palliative care in Slovenia include:

- ensuring high quality, equal and accessible palliative care for all who require it, anywhere and without delay;

- continuous palliative care, with a patient’s record that includes all aspects of palliative care;

- ensuring efficient and transparent use of funds for palliative care;

- providing well coordinated palliative care to patients at all levels of the healthcare system, with institutional care operators providing daily and 24-hour services;

- providing education for basic and specialist palliative care;

- raising public awareness of the principles of, and need for palliative care

.

I spent a few weeks in Slovenia during my travels around the world in 2006 - 7 and have since, when asked, suggested that Slovenia was perhaps my favorite place. It's a beautiful country with all the European charm and quaintness. The country's overcome a horrid history, reclaimed it's traditional languages, worked hard to boost education and the economy. I'm intrigued but not surprised to hear that, with it's progressive social policies and attention to human welfare, Slovenia has made this step toward improving end of life care for her citizens.

NEJM, Health Care Choice, and Losing Our Ability to Decide.

A new study shows that about 30% of us lose our ability to make our own health care decisions by the end of life:

Nearly 30% of seniors will eventually need someone else to make healthcare decisions for them, according to a recent report.

Researchers at the University of Michigan reviewed the records of 3,746 people aged 60 and older (the average age was 80) who died between 2000 and 2006. Nearly 30% of those individuals at some point prior to death became unable to make healthcare decisions for themselves, researchers found. Of that 30%, roughly two-thirds had a living will of advance directive.

Most individuals with an advance directive wanted non-aggressive palliative care; only 2% wanted aggressive life-prolonging care, according to the report. The research appears in a recent edition of the New England Journal of Medicine.

More here. And here.

Reports on the 5th Anniversary of the Death of Terri Schiavo.

Here are some links and commentary from yesterday:

Family Research Council has new "guidelines" for end of life care

Jason Poling, a pastor, writes for In Good Faith blog at the Baltimore Sun about the ironies of the Religious Right's demonization of Michael Schiavo while supporting traditional marriage.

Americans United for Life is justified in making up their own facts so long as it's for a godly cause

Steve Ertelt at Life News

North Country Gazette podcast link, with Bobby Schindler (ususal "murder" stuff)

Arizona Daily Star offers resources for those planning for end of life care

Psalm123 Blog "Martyr of the Culture of Death"

Bobby Schindler at Town Hall spinning Schiavo's death as "cruel bigotry" against the disabled

Stephen at Not Dead Yet

Minnesota Citizens Concerned for Life derides "quality of life" discussions

David Casarett, MD, at HuffPo, "As a palliative care physician, I was fascinated, amused, shocked and embarrassed, in more or less equal measure, by the myths that circulated about end-of-life care." And a clip:

And I was embarrassed that instead of engaging in a thoughtful dialogue about how we die, and how we should die, for several months we were immersed in a shrill shouting match about issues that bear no relation to the reality that my patients and I face every day. In short, as that public debate was unfolding, I felt very much the same way that I felt as the nation watched Terri Schiavo's story reach its conclusion in 2005.

And that reflection is ironic, because the advance care planning legislation that sparked the death panel debate was designed to prevent the sort of family disputes that made Terri's care so difficult. But what should have been an unobjectionable provision in the health care reform legislation quickly became mired in partisan rhetoric and outlandish rumors. A straightforward mechanism to promote choice and autonomy was quickly reframed as precisely the opposite. Looking back on those events, it's difficult to believe that we're any closer to an open dialogue about death and dying than we were five years ago.

In fact, a dialogue may be even less attainable now. As if the "death panel" label weren't destructive enough, recent health care reform discussions have linked end-of-life care to cost-savings and rationing. So whereas five years ago the public was afraid that family members might "pull the plug," now those fears have focused on Congress.

It's no surprise, then, that Congress has shied away from end of life care. As a result, advance care planning was never given the consideration it deserved in the Senate bill and eventually dropped out of sight. In fact, it's unlikely that we can expect any meaningful end-of-life care legislation from Washington in the foreseeable future. End-of-life care has proven to be too divisive, and too politically dangerous.

The ER and Cancer Patients.

Suzana Markowski has a new post at Pallimed about emergency room use and cancer. Her post looks at a new study of ER visits and examines ways to better treat end of life issues. Here's a clip:

We know already that most people want to be at home with family at the end-of-life, we also know that most end up in hospital or institution. We have hypothesized that increasing access and enrollment to hospices might help people meet this goal. This article seeks to understand how frequently and why patients with end-stage cancer choose to go to the ER.

So this begs the question… what percentage of patients with cancer visit the emergency room during the last 6 months and 2 weeks of life?
Of the 91,561 patients who died of cancer between 2002 and 2005, 84% of patients visited the ER in the 6 months prior to death and 34% of patients visited in the last two weeks before death. They outline the principle reasons for emergency room visits: primary cancer (mostly lung cancer), uncontrolled symptoms (pain, dyspnea and other non-pain symptoms), caregiver fatigue, and infection.
Top reasons for ER visits among patients with cancer:

While many of the patients studied ended up admitted to hospital, the authors – and I believe, rightly so – postulate that most may have avoided acute-level care had the quality and quantity of care had adequately supported the needs of both patient and caregiver. Instead of emergency room care, most of these patients required “either additional support to remain at home or direct transfer to a palliative care unit or residential hospice.”

Barbera and colleagues suggest that “comprehensive and coordinated” palliative care could serve the needs of most of these patients and their caregivers and meet this demand for quality and quantity of care, allowing patients to have symptoms tended to at home, in clinics, or in in-patient or residential hospice facilities.

How Do We Productively Talk About Death?

From Patrice Villars at GeriPal, a discussion of how palliative care practitioners - and the medical profession - talk about death. She starts with a reference to a talk she attended at the recent HPNA/AAHPM conference by Diane Meier, MD titled “Update on National Palliative Care News: How the Big Picture Affects You.”

My first reaction to the post is to disagree. Much like religion, death tends to be discussed in society in a bifurcated way where all nuance and practicality - and actuality - are lost. It's either a screaming, scary nasty thing to avoid at all costs or a saccharine-tinged "passing" into a "better place. (With religion, the portrayals are of nutso crazy bible-thumpers or benign do-gooders with the best of intentions.) But with both death and religion, neither portrayal or language-set is wholly accurate/true.

My other - new - hat is editor of TheRevealer.org (relaunching in the next few weeks). The site looks at how religion is portrayed in the media. And I think the same work toward nuance and understanding there regarding religion reporting is applicable to death "reporting." And so, if avoiding the exaggerations of death and getting at the practicality, complications, nuance and inevitability requires readdressing how we discuss death, then yes, examining the terms used is important and beneficial. But if we're devoted to creating a lexicon about death that further removes us from its actuality, then I say we're on the wrong path.

Here's a great clip, though I recommend you go to the site and read the rest of it, and the comments too:

The new (to me) hot word in the political arena is “optics”. It’s all about how you see things - perception. Perception is in the eye of the audience. (Kind of like pain or shortness of breath is what the patient says it is.) We want and NEED to have a relationship with our patients and families who are part of the general public. We need them to perceive us as helpful and valuable both to serve them and to promote our vision of a holistic health care environment that matches patients’ preferences with appropriate care. So why do our patients/families, through the media and through our work, often NOT see us as helpful and valuable, but, as my son once proclaimed me, as “The Mistress of Death”? What, we must ask if we want to sustain a future in this relationship, is our part?

Dr. Meier observed that we use language that associates palliative care with dying. Consistently. Language is important. Language creates perceptions and (may) define our relationships with the people we care about most. Consider that the tiny line in the proposed health care bill allowing physicians to be reimbursed for having a conversation every 5 years with their patients about advance directives DIED because of optics. It was perceived (used, twisted, misconstrued) by a few clever politicians that physicians were going to talk about dying and (logically, of course) talk people into dying. They quickly conveyed this idea to the general population, OUR audience – our audience who votes. Language. Optics.

Our audience – patients and families – often don’t want to hear about dying. Death and dying is scary. Scary equals reactionary sound bites (i.e. death panels) that can dash any hope we have of reasonable reform and ongoing open relationships. (Ex. Advance directives talks with your physician = dying = fear = death panel = killing Granny and babies with Down’s syndrome). And guess what other words also equal death to our audience? Terminal. Advance directives. End-of-life. Hospice. Yes, and even bereavement. As long as the majority of our patients/families (to say nothing of our health care colleagues) associate palliative care with dying, they will not have access to our services.

Whoa, this is a lot to take in. You mean don’t use the words we have been using for decades to demystify the fear and denial of death in our culture? Isn’t this who we are? What about the movement we have come to birth, nurture and protect? Really, stop using those words?

On the other hand, if these words cause others to retreat from our services, how does it serve either of us? Does rubbing someone’s nose in something we feel is important make them want to be our friends? Probably not.

How We Define Death And The Future of Hospice.

Larry Beresford challenges the latest meme that hospice patients have declined in number recently. He notes that, among others, Tim Cousounis at Palliative Care Success and the Urban Institute's Howard Gleckman, who wrote a recent article for Kaiser Health News, have examined hospice enrollment and concluded the same thing. It is in decline.

The reasons they cite are varied but predictable: a bad economy makes doctors hesitant to refer profit-generating patients to hospice where the income derived from costly curative treatments naturally declines; Medicare rules require that a patient have less than 6 months to live before going into hospice and sometimes patients, particularly chronically ill ones, live beyond that time frame, a situation Medicare would like to avoid; and of course, the constant challenge of image that hospice faces as a place where one goes when they have "given up" continues to prevent ever-growing enrollment.

From Beresford's latest blog post:

I contacted a couple of leading hospice executives to ask them if the declining enrollments trend is true. One said that hospice patient census fluctuates up and down for all sorts of reasons, but that his agency's is up, after a sharp drop in 2008. But Samira Beckwith, CEO of the highly successful Hope Hospice and Palliative Care in Fort Myers, Florida, responds, "I think that everything [Gleckman] says in his article is true." One of the problems, she says, is that America's hospices still have not successfully communicated the idea that hospice care means "living" as fully and as well as possible until death comes. Instead, Americans have learned a little bit about hospice and believe it means "they have to die really soon if they say yes."

The problems of misunderstanding, misconceptions and mistrust of hospice care by people confronting hard choices at the end of life have been around throughout the history of hospice in America, even as the number of people receiving hospice care has steadily grown, up to 1.45 million in 2008. Physicians' reluctance to bring up the "H" word with their terminally ill patients has been well-documented. The second-guessing of hospices' enrollment decisions by Medicare has also intensified recently, but is not a new phenomenon. A similar round of government scrutiny occurred in the mid-1990s. And still the trends of the number of hospices, number of patients served and total Medicare outlays have pointed steadily upward since the first U.S. hospice opened in 1974 and since Medicare began paying for hospice care in 1984.

Beresford's conclusion is that perhaps this ebb in enrollment is really a reflection of market capacity:

The MBAs who run fast food or pharmacy chains are taught that when your company or your industry stops growing, it is already dying. But is that the right model for a service designed to promote compassionate, individualized, quality of life-promoting care for dying patients and their families? Shouldn't hospice's goal be to offer a meaningful option to all those who might need it and want it, and who might qualify, according to the rules of those who would pay for it, as being terminally ill -- rather than just continuing to grow? And if there is a current decline in referrals, given the recent proliferation and rampant competition of mom-and-pop hospice providers, particularly in certain metro areas and in the states of Alabama, Mississippi and Oklahoma, perhaps what's happening now is what the economists might call a necessary market correction.

I tend to disagree with Beresford and here's why: hospice is really the only option for patients who wish to die at home and so, as long as statistics continue to show that a majority of Americans wish to die at home (80%) and that most continue to die in facilities (75%) there's room for hospice to grow.

Whatever strides the hospice community has made in the past three decades or so of convincing society that the patient can decide where they die (and increasingly, when), the prevailing institutions in our culture - the church, the medical industry, and the state - haven't done much to change the tone of discussion about death. Only in Oregon, where the state population has had a long and in-depth conversation about end of life care (primarily because of the successful initiative to legalize assisted suicide) is there a more sophisticated understanding of end of life care options. I suspect that, as statistics in 2007 showed, that Oregon continues to lead the country in hospice enrollment. A couple of other factors that are working against hospice enrollment:

1. The rise of "pro-life" opposition to end of life choice (as conveyed through fear of "socialized" medicine, removal of artificial nutrition and hydration, end of life care planning (DNR, living wills, medical proxy designation), and aid in dying) and simple statistics that show the devoutly religious are more inclined to seek aggressive, futile care at the end of life are only one front that prevents society from viewing hospice as a healthy, life-affirming choice.

2. The medical industry has absolutely no incentive to direct terminal patients to hospice. Doctors are entrenched in a culture that, as Joanne Lynn says, puts patients on a "glide path" that involves aggressive treatment until death, as though death is a "failure" of medicine that can be cured. Doctors have only begun to be trained in medical schools for end of life care discussions (and continue to not be reimbursed for the necessarily lengthy discussions); palliative care is growing but still in its infancy; doctors tend to grossly over-estimate the time a patient has before death (hence delayed and briefer hospice enrollment); aggressive care is revenue for medical institutions and doctors; the conservative AMA and other medical associations (with the exception of many nursing organizations) have resisted society's call for greater improvements to end of life care. As well, advancements like 911, CPR, and the ability to lengthen a patient's life have prevented serious discussion about "quality of life." "Doing everything we can" to save a patient is the default, whether it lengthens the patient's life or keeps them comfortable - or not.

3. As we've seen during the year-long health care debate, the state has done little - either at the state or federal levels - to promote or legislate sound end of life care laws. I can think of only a handful of state laws that promote end of life planning. Veteran's Affairs, the largest health care provider in the US, has made commendable, great strides in meeting patient's needs and wishes in the last months of life but at the end of last year we saw them come under attack for distributing a planning guide, then termed the "death book." This noise, however illegitimate, makes institutions, health care providers, and doctors hesitant to discuss these issues.

In essence, the media and society have allowed fear-mongering and inaccurate accusations to shut down the end of life discussion.

The entire non-sensical circus that stemmed from the health care debate - death panels, the state's gonna euthanize you, etc. - has had an effect. The environment we're in at the moment (a political battle that has less to do with patient care than politics) has had a dampening effect on legislative efforts to enforce good end of life care planning.

The powerful Catholic church, a strong opponent of removal from ANH and of assisted suicide, is in a position where they must articulate nuanced and complicated arguments for hospice (an organization founded by the Catholic Cicely Saunders and long affiliated with the Catholic church) if they want to support hospice at all. For their political purposes, it is much better to push "all life is sacred" than "you're bound for a better place," both rhetorical constructs that sound true enough but work to As well, the church is firmly under the influence of a staunchly conservative leadership right now. And, as the second largest operator of hospitals in the US, they too have an interest in keeping patients in hospitals, receiving aggressive care. Their force and influence was proven during the health care debate.

And lastly, death just isn't what it used to be. Death used to mean the almost simultaneous end of a heart beat, breathing and brain function. In the past 30 or so years medicine has figured out how to maintain the first two indefinitely. And brain function, as we've seen with the cases of three young women - Karen Ann Quinlan (1985), Nancy Cruzan (1990), and Terri Schiavo (2005) - is increasingly considered not a suitable qualification for death.

But there is hope for hospice. Baby boomers are increasingly greying and, as they have changed every other institution their generation has moved through, end of life care is bound to be altered by their increasing need of it. As well, our health care system is not equipped for such a large influx of elder patients. The threat of economic destruction should be enough to push US society and government to reconsider how we care for those who are dying. Hospice will play a vital role in that reconsideration.

Is a Default Choice Still A Choice?

A shameless reposting of Joanne Kenen's post at The New Health Dialogue, because the entire piece reveals the default "choice" of aggressive care that individuals must work against to direct their own care:

I’m traveling this morning to a palliative medicine conference in Boston, so it seemed a good time to leave you with my thoughts about a recent Narrative Matters essay in Health Affairs, called “Shock Me, Tube Me, Line Me."

Perhaps I don't really have to write much. The title says it all.

I usually like these narrative essays. They are thoughtful, literary and evocative. But this one has been bugging me for weeks. The author, Boris Veysman, an ER doc at an academic medical center in New Jersey, writes about taking care of a terminally ill woman, suffering from metastatic cancer. Her wish to have a low-tech death, not tied up to tubes and machines, merely confirmed his own desire to have “everything” done to prolong his life when his time comes.

Let’s be clear. People in our medical system have a right to choose aggressive care, as Veysman has. That’s not the point of his essay. He is not arguing that we are taking away that right. He is arguing against exercising it. And while he understands the components of end of life care, from ICUs to hospice, he has the sequence all mixed up.

This patient arrived at the ER, conscious. Her daughter dropped her off, and went to park the car. Almost immediately, the woman collapsed and was close to death. Dr. Veysman, appropriately, asked if she had a DNR, do not resuscitate. Or a DNI, do not intubate. No one knew the answer immediately -- the daughter was still parking. Without that knowledge, the ER team did the appropriate thing. They resuscitated. They intubated. They did aggressive and forceful CPR, with the doctor doing the compressions himself, not trusting anyone else's strength and expertise but his own. “Yes, she is now sort of alive because of me," he wrote. They put in a central line and got her on an external pacemaker. They gave her heart electric shocks. They stabilized her.

Then they found out she had a DNR. And a DNI. And metastatic cancer that had stopped responding to one chemotherapy treatment after another. But he had saved her. "The interventions were optimized and performed without delay by skilled hands," he wrote. She awoke, gagging, coughing and reaching for the breathing tube in her throat. He ordered sedatives and powerful painkillers.

She had been weak, he learned. She had little appetite and had felt unwell. She was depressed. Her kidneys were failing. She was dying.

He did not think it was time for her to die. He thought she might have a few weeks left. He thought she should spend them on dialysis.

"I think there’s a good chance she is fixable in the short term," he told the family. "She needs dialysis, but other than that we can address every other comfort issue. I think she can wake up and talk, probably even write or use a computer. I think her depression, weakness, appetite, dehydration, and malnourishment can be effectively treated. Whatever her prognosis is from the cancer, I think she can probably get at least a few good weeks, which is done best by a hospice. She might want to do something with that time. To finish up. To say goodbye and good luck. I think it’s too early to die. To give her a chance, however, we must go all out and ‘do everything’ for the next several days."

He had never met this patient before. He did not know her values, her beliefs, the length and depth of her illness, the severity of her pain. He was right of course that hospice could help with both the physical and existential symptoms. We can only wonder regretfully why the family had not gone that route earlier -- and wonder whether or why her oncologist had failed to suggest it. We can only wonder what the final course of her life would have been had she gotten palliative care even earlier, helping her all through the course of her deterioration and illness, even before it was time for hospice. But now her kidneys were failing. She was ready to die. The ER doc disagreed.

He wanted her to get dialysis so she could get hospice so she could die a little later. (Never mind that, according to a hospice industry official I consulted, a hospice was unlikely to take a patient just beginning dialysis in order to survive long enough for hospice. Patients can continue dialysis and get hospice services if the kidney disease is not terminal, is not the disease that qualifies them for hospice. But the idea of starting dialysis in order to get hospice would be unusual to say the least).

End of life, he writes, can be done better. He’s correct. It can. "Give me a motorized wheelchair and a feeding tube if I need them, along with a tracheostomy to help me breathe and dialysis to filter out toxins. Those do nothing to stop a good mind and a strong spirit, while permitting both to overcome obstacles of blood and flesh." That's his opinion and his wish. Today he could have that wish granted -- and Medicare, meaning the taxpayer, would pay for it all. But then, after having all those machines and tubes and procedures, he does acknowledge that time would come when maybe he wouldn't want them any more. "If I wish to die, let me die," he writes. Hopefully when his time comes, his ER doc will be aware of his wishes.

Decline in Hospice Stays and Duration?

Howard Gleckman of the Urban Institute writes at Seattle's Local Health blog that hospices are seeing fewer patients and shorter stays and suspects it caused by doctors who don't refer patients early enough and misconceptions about hospice care:

Suddenly, many hospices are admitting fewer patients. Others are increasingly caring for people for just days or hours before they die. The result: cash-strapped hospices are cutting back on nurses and aides, and patients are missing out on critical end-of-life care.

It is not clear why it’s happening, but some hospice officials blame both a bad economy and Medicare rules that unintentionally discourage doctors from referring all but those who are about to die.

Even though hospices have been operating in the U.S. for three decades, they remain widely misunderstood. Hospices provide medical care, pain management, spiritual and social care and volunteer support for those nearing the end of their lives. And their patients often live longer than if they were still receiving full-blown medical treatment.

Nearly all hospice care is paid by Medicare, but unlike most providers, hospices are paid a fixed daily rate (on average about $140-a-day for home care patients). If a hospice provides care for less, it keeps the difference. If a patient requires very costly care, the hospice can lose money.

The number of patients served by hospices increased from about 1 million in 2004 to nearly 1.5 million in 2008, while the number of hospices grew from 3,600 to almost 5,000. Most of this explosive growth has been driven by for-profit companies.

But in recent months, hospice officials have seen a downturn. In some states, such as Oklahoma, heavy competition has forced consolidation, and at least 10 hospices have closed in the past year.

Elsewhere, hospice officials blame the bad economy. Patients who have lost jobs–and insurance—may be waiting longer to visit the doctor and consequently are diagnosed with terminal illnesses at a very late stage.

Some hospice executives say the poor economy may also be driving doctors to hold on to patients longer.

Here’s why: Once a patient joins hospice, she’s likely to see her physician far less often. Her doctor can usually order tests and treatments only to keep her comfortable, and not to try to cure her terminal disease.

And while it may still be appropriate for, say, cancer patients to receive costly drugs or even radiation therapy to relieve pain, hospices must pay for these treatments out of their daily Medicare rate.

That inevitably can create tension between the hospice and the physician.

And it may add up to less money for doctors at a time when they are already feeling squeezed. One physician I spoke to strongly rejected this argument, insisting that declining compensation does not slow referrals.

But another—an oncologist who frequently refers to hospice—acknowledged the problem. “There is a financial deterrent,” she says.

At the same time, new Medicare rules may be further discouraging physician referrals. Medicare has begun cracking down on a handful of hospices that are making big profits by taking on chronically ill, but not terminally ill, patients.

While hospice patients are normally expected to have six months or less to live, some hospices have many on their rolls for a year or more.

In one attempt to stop this practice, Medicare now requires doctors to write a brief narrative describing why a patient is appropriate for hospice. Trouble is, says one hospice official, “We’re getting a lot of pushback” from doctors.

In 2008, more than one-third of patients were enrolled in hospice for a week or less, and some organizations are seeing the number of short stays increase, perhaps because these requirements may be making already reluctant doctors even less willing to refer to hospice until their patients are actively dying.

Mark Murray, president of the Center for Hospice and Palliative Care in South Bend, Ind., says that in the past year, eight percent of his referrals died before they could even be admitted, and 20 percent died within 48 hours.

Those last-minute decisions put enormous financial pressure on hospices and make it impossible for patients to get the full benefit of end-of-life care.

These disincentives come on top of a long-standing reluctance on the part of many doctors to even talk about hospice. In a 2009 study, more than half of patients with stage IV lung cancer said their physicians never even raised the option.

I am a huge fan of hospice: My wife is a hospice chaplain and both my father and father-in-law were hospice patients. These organizations are a model for coordinated care that other health care providers would do well to copy.

But doctors need to be persuaded to use hospice. And that may mean changing a payment system that may be discouraging them from using this valuable service.

Health Care Reform and Palliative Care.

Tim Cousounis at Palliative Care Success looks at the reasons why Palliative care, though cost saving and vital to good end of life care, is not likely to expand at a great rate any time soon:

Why are we not likely to see the influence of palliative care advanced during the health reform period? Two reasons leap to mind.
One, hospitals and hospices are the most prominent, and frequent, sponsors of palliative care programs, and we know what’s happening to their reimbursement (it's getting squeezed, with no end in sight). So, as these provider organizations are forced to tighten their belts, is it reasonable to expect (especially in light of the heightened priority on patient safety ) hospitals to increase their financial support of palliative care services? Furthermore, it’s unlikely that the financial performance of hospices will dramatically improve anytime soon. So, we shouldn’t expect a legion of hospices across the nation committing greater resources to palliative care services. It’s not that hospital and hospice executives are tone-deaf to palliative care. It’s just that these executives are faced with budgetary trade-offs and palliative care is not (yet) a high priority.
Two, primary care continues to be undervalued within the American medical system. Will these prevailing views change? Of course. Anytime soon? Unlikely. American primary care is in shambles, and it is now clear that it will not be viable in the future unless significant changes occur in our national attitude about its value and in the way we pay for it. While in other developed nations, 70-80 percent of all physicians are generalists and 20-30 percent are specialists, in America the ratio is reversed, the result of a payment system that has evolved to reward expensive care and penalize proactive management, even though the data are unequivocal that more palliative care (according to the Dartmouth Medical Atlas) within a community results in lower costs and better late-life care.

Thinking About How We Talk About Health Care.

Alex Smith at GeriPal asks us to consider the language we use about medical care.

Words have power. Language has power.

The words we use may comfort or shock, allay or provoke, sooth or batter. Words often imply layers of meaning that are not explicitly articulated, yet rest beneath the surface:

“I worry that time is short for you” (You are dying) (I care about you)

“I wish we could have done more” (Nothing would have changed her death) (I am on your side)

“I hope with you that you’ll get better, but I think we should prepare in case things don’t go as we hope” (You are not getting better) (I support your hope)

I can think of no situation in which there is greater variation in how our choice of words varies than how we explain cardiopulmonary resuscitation (CPR). Many people, including me, vary the language we use depending on our recommendation for treatment. Some use more drastic language than others. Here are some examples I have encountered, again with possible implied meanings in parentheses:

“Would you like us to restart your heart if it stopped beating?” (Please say yes) (I’m just asking as a formality)

“Would you like to allow us to let you to die naturally?” (Saying no goes against nature) (We have an unnatural power over life and death)

“Would you like us, in what would naturally be your final moments, to press on your chest and break your ribs, shove a tube down your throat and poke you with needles in lots of places in a chaotic attempt that has a very small chance of giving you more time to be technically alive but unlikely to ever return to meaningful communication with others?” (Please say no) (CPR is horrific) (I don’t want to have to do this to you)

“Do not punctuate the end of your life with a senseless act of brutality!” (You’re crazy if you say you want CPR)

Using persuasion to argue for something we believe is in a patient’s best interest is ethically permissible. Coercion - the use of force or threats – is not. Guy Micco, one of our contributors and a physician ethicist in the East Bay, talked with a philosopher who preferred the terms “influence” and “undue influence.” "Influence" is, of course, permissible - the line not to cross is the “undue” one.

Where do you see the line with these statements? What language do you use? Do you find yourself varying the language you use based on your recommendation for or against CPR? Does “unbiased” language exist?

Lifenews Discredits Palliative Care.

Lifenews published an irresponsible and misleading article yesterday by writer Mary Ann Kreitzer that uses friend-of-a-friend conjecture and emotion to discredit palliative care. Like Bill Frist diagnosed Terri Schiavo by video, Kreitzer uses a telephone conversation to determine that her friend's father was "killed" by palliative care.

Irresponsible: because millions of elders are now facing end of life care and planning and require fact-based, scientific, medically sound advice on what their options are for their dying and death. This article plays on fear of death, the taboo of discussing end of life choices, and religious convictions to damage patients' understanding. It is a horrible disservice to seniors.

Misleading: In short she gets all the facts wrong simply because she is not medically trained, is not intimate with the medical facts of the man's death, does not understand that dementia and alzheimers not only damage the mind but the body, has little knowledge of what palliative sedation is, and in short, contributes to fears that elders already have about end of life issues.

I wish we could say that this type of egregious misinformation and fear-mongering was rare, but unfortunately it's not. While 75% of elders say they would like to die at home, 80% die in health facilities, often without any control over their end of life decisions, financial arrangements, or knowledge of patients' rights. Over the past thirty years, the sort of work that Kreitzer is doing with this post has reduced elders to victims, not in control of their end of life decisions or care. Kreitzer demeans the autonomy of elders by reducing their agency in their own health care decisions.

But there's something else at work in this piece: grief is a complicated and nuanced emotional process that, when stymied by blame and anger, however unjust, can damage the grieving of those who have lost a loved one. Kreitzer's damage is not only to those seniors who must face the dying process without guidance and accurate information but to the loved ones who in the wake of death are faced with the work of their own grief.

By using only the barest outline of a man's death, Kreitzer makes the case that the nebulous "culture of death" is out to kill our vulnerable seniors. Nothing could be farther from the truth. Only accurate information, medically sound decisions, advanced planning, and acceptance of impending death will empower our seniors to die the way they want to. Kreitzer deserves grave criticism for working to distort our human right to a good death.

From Lifenews:

I spoke to a friend this morning whose father was murdered by terminal sedation (aka "palliative" care). Her father suffered from Alzheimer's and his mind was pretty well gone, but physically he was in great shape.

He and his wife lived with one of my friend's children who took him for a long walk every day and knew how to manage all his grandfather's moods. They were good buddies. My friend lived nearby and spent as much time as possible visiting her parents and enjoying her father's company.

But the rest of the family (including my friend's mother who had power of attorney) decided to put him in a nursing home where he was difficult to control because he wanted to be released. My friend told me that every time she went to visit him he was trying to escape -- pulling at every door and even the bookcases looking for a way out. Three nursing homes and several months later he pretty much gave up.

When she went to see him he would be sitting in a wheelchair slumped over and drooling. He got an infection and ended up in a hospital "palliative" ward where he was denied food, water, and antibiotics. Within several months, he went from an elderly man who was walking two miles a day with his grandson, to dead from dehydration and terminal sedation. It was Terri Schiavo and Hugh Finn without the publicity.

My friend considered trying to get guardianship at one point, but she was familiar with the earlier cases and knew it would be a lengthy legal battle and the result would be the same. He had also deteriorated so much she didn't think he could recover. With a number of young children still at home, she didn't think she could deal with the fight. So here was a faithful daughter (and her husband) willing to care for both her parents until they died, who had to watch while her faithless siblings and her mom murdered her father.

Welcome to the realities of the culture of death.

Terminal sedation is abortion for the elderly. You have dementia and get pneumonia? Like Rahm Emmanuel says, Never let a crisis go to waste. See it as an opportunity for a quick exit. No antibiotics and terminal sedation. Abortion completed. Your loved one is healthy but brain damaged like Terri Schiavo and Hugh Finn? No problem. Starvation, dehydration, and terminal sedation. Call it late-term abortion.

You think I'm exaggerating? The New York Times ran an article on December 27, 2009 on the practice. It is common in hospice programs. Hurry the patients along for the peace of the family and to empty the bed. Saves everyone anxiety, money, and hassle. Except, perhaps, the patient. But he is drugged so whatever objections he may have had, you'll never have to hear them.

Sometimes, as in my friend's case, though, things aren't that smooth. Far from bringing peace to families it brings terminal strife and family breakdown. And in the case of my friend's mom, will children who killed their father, hesitate at doing the same thing to the their complicit mother? After all, she had no objections to killing dad; so how can she object to her own quick exit? It's for the children (and their inheritance?).

I wish I could say this is the only case I know of the deliberate murder of elderly parents, but it isn't. It's common practice in some hospices with or without the complicity of the families. Situations like my friend's are also becoming more and more common as the baby boomers, who often gave their children nothing in the way of faith, face the results of their hedonistic lives. "Hey, Mom put me in day care for most of my childhood and aborted my siblings; I'll put her in a nursing home and pull the plug as soon as possible." So much easier for everyone.

The worst part, however, is that while the body is being killed, the souls of the killers are dying as well. How does God who said, "Honor your father and your mother," look at the deliberate murder of parents? It is mortally sinful! And that's the greatest suffering for my friend. She would like to see her family in heaven, but fears that this life on earth may be the only common ground they ever share.

Please pray for all those in danger of death today from terminal sedation and for those who will carry it out and enable it. It's a soul-killer for sure! You can call it quick and painless, but in the end the palliative care ward, like the abortion mill, is literally hell on earth.