Expert Ideas Without Implementation

Care of Americans in their finals months is getting significant and promising attention. 

On January 29 and 30, a summit of national leaders meet in Washington, D.C., as the Coalition to Transform Advanced Care. Less than a month later, the newly formed Committee on Transforming End-of-Life Care, meets in Washington for the first time.

What might be accomplished? And how soon?

The answer may be in Massachusetts, but it’s an answer in progress. 

“I am truly baffled,” Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, told the Boston Globe. “We are making practical recommendations for everyone to be taken care of in the way he or she would want to be.”

Forrow chaired an expert panel that studied end-of-life care and recommended ways for the state to improve treatment of the dying. They produced an impressive document. It is now two years old. To date, what guidance it provided largely has gone the way of the Institute of Medicine’s forerunner to the new Committee on Transforming End-of-Life Care.

That committee produced the 1997 report “Approaching Death: Improving Care at the End of Life.” 

The Committee on Transforming End-of-Life Care begins with awareness both of that earlier committee’s good work and how it was largely ignored.“These issues are not new,” the IOM website notes 16 years later. “While the 1997 IOM Report made important and wide sweeping recommendations, progress in implementing them has been slow.”

Forrow’s interview was part of a Boston Globe story about dying in Massachusetts. “Precious final days for many Massachusetts residents are still not spent the way they would have chosen -- at home with loved ones -- but in a hospital,” reporter Kay Lazar wrote. 

The story offers a good analysis of why valuable information doesn’t get through to patients and their families (in part because dying is a difficult subject for some to discuss and others to hear), and presents ideas for improving that communication, including the use of video.

Recommendations in the report by Forrow’s expert panel deserve to be acted upon, including communication training for caregivers, and accountability for such training with the state.

Just as “Romneycare” in Massachusetts inspired “Obamacare” nationally, perhaps the Massachusetts expert panel can serve as a model for the experts gathering in Washington, DC over the next month.

Including, one would hope, implementation.

Transforming Care & Communication

Jennifer Mack and Thomas Smith give me hope. I like that in a physician.

That they pull it off in a piece with this in its title --  "Reasons Why Physicians Do Not Have Discussions About Poor Prognosis" --  might be a medical miracle.

Mack and Smith give me hope that oncologists can be as adept with good communication as they are at titrating chemo, and that maybe we're ready for a national conversation about how we die.

Conveniently enough, such a conversation begins with the Committee on Transforming End-of-Life Care when its members meet Feb. 20-21 in Washington, DC.  This Institute of Medicine committee is a follow-up to one that produced the 1997 report Approaching Death: Improving Care at the End of Life.

Mack is an oncologist at the Dana-Farber Cancer Institute. Smith is director of palliative care at Johns Hopkins. In the Journal of Clinical Oncology from August 2012, the authors attempt to debunk excuses for not having hard conversations.

To  "it will make people depressed," the authors say: "Incorrect. In fact, giving patients honest information may allow them and their caregivers to cope with illness better."

They proceed to address perhaps understandable but defeating physician thinking that:

• "involvement in hospice or palliative care will reduce survival"
• "we do not really know a patient's prognosis"
• "talking about prognosis is not culturally appropriate"
• "we do not like to have these discussions and they are hard on us"
• and why confronting these "excuses" matters  (in short, because it's in the patient's best interest)

The one that resonated with me was their answer to  "it will take away hope." 

"Incorrect," say Mack and Smith. "In fact, evidence suggests that hope is maintained even with truthful discussions that teach the patient there is no chance of cure. ... Hope was increased or at least preserved when parents of pediatric (cancer) patients were given prognostic information, even if the news was bad."

The Community Ethics Committee, the group behind this blog, is completing a report to the Harvard Ethics Leadership Group on the intractable disputes in end-of-life care that sometimes emerge between caregivers and patients/families when further curative or therapeutic treatment is seen as futile.

Distrust and loss of hope are central to such disputes, especially amid differing cultural and religious values. At such a time, communication skills are crucial.

Maybe what Mack and Smith are on to here is the idea that, even with bad news, not talking about it only makes it worse. And maybe what transforming end-of-life care requires is open and ongoing dialogue -- especially the difficult subjects. 

I know from experience that some physicians are amazing communicators -- great listeners, empathic carers, tolerant of my need for multiple explanations, and able to respect values that are not their own. Not all physicians have these skills. For them, a team approach to care, with nurses, ethicists and chaplains trained and empowered, is maybe the only way to ensure good communication and care for all patients.

Through the end of January, the Committee on Transforming End-of-Life care is taking feedback in preparation for its first meeting. One suggestion I've seen is from Dr. Christian Sinclair, who says the committee lacks geographic diversity and hospice and non-academic palliative representation. See pallimed.org

What are your priorities for transforming end-of-life care?

Teaching Empathy to Medical Students

Understanding Barriers to Palliative

This won’t be news to any Intensive Care physician. But as I try to better grasp what often segregates the palliative care speciality from patients who would benefit, a review at the online resource PulmCCM.org (“all the best in pulmonary & critical care”) was illuminating.

The PulmCCM.org piece is titled “Burnout syndrome among critical care healthcare workers.” It reviews a report in journal Chest, April 2012 edition, titled “How to bill for palliative care in the ICU ... legally.” 

Even the latter headline told me something I didn’t know: that bringing palliative into the ICU can require an artful dance. In fact, it’s one in a series of artful dances, some emotional, some financial, some medical.

“To an intensivist,” PulmCCM.org writes, “providing palliative care often means having multiple time-consuming and emotionally challenging interactions with families struggling to cope with the impending loss of their loved one. The emotional content of these interactions can be strongly positive, negative, or somewhere in between, but frequently it’s an intense and draining experience, possibly contributing to burnout among ICU physicians. So at least you should get paid for it, right?”

Burnout, whether among physicians or nurses in the ICU, is of special interest to me now as the the Community Ethics Committee nears completion of a study of the intractable disputes that arise when continued medical treatment is considered futile by the care team. Burnout and the stressors behind it, at least in part, are what made the CEC feel an obligation to study the issue.

The financial dance is over Medicare reimbursement. Chest reported: “Split or shared service performed by a physician and a qualified nonphysician provider of the same group practice is not reportable as a critical care service; only cumulative critical care time provided by physicians within a group is reported as such.” 

“In other words,” PulmCCM.org added, “midlevels cannot bill for palliative care services,” and “the above goes for residents’ work, as well, at teaching hospitals, where attendings must also document care well enough for it to justify billings independent of the resident’s note.”

Really understanding the bureaucratic complexity of all that is above my pay grade, as are all the codes and details of legitimately billing for palliative services. But with palliative increasingly seen as a perhaps uniquely capable of serving a patient’s best interests and values, financial disincentives for its use seem especially short-sighted and thoughtless.

But Medicare policy on ICU billing isn’t the only barrier to broadening palliative’s reach. A commentary at cancernetwork.com (“home of the journal Oncology”) describes both benefits that oncologists are seeing in palliative care, and barriers to collaboration.

One barrier is “the lack of a ‘standardized’ palliative intervention,” according to the authors.

But palliative’s benefits to patients are well appreciated.

“It is well accepted that palliative interventions derive much of their success from a fundamentally patient-centered, rather than illness-centered, approach to care,” the authors write. “With a patient-centered focus, the physical, psychological, spiritual, and social needs of patients, as well as the needs of their caregivers, are addressed.”

This points to the benefits of a comprehensive, team approach, which leads to the next barrier: no surprise, it involves money.

“The lack of financial and educational resources often limits the ability to provide such a comprehensive team. ... (And yet) attempting to integrate palliative care into oncology care is still a worthwhile endeavor even when resources are limited.”

To make palliative and oncology more collaborative, the authors say, it is “critical” to develop an integrated outpatient model. “By utilizing the same clinic space and hours, the potential for timely communication among palliative and oncology providers is greatly enhanced. Feasibility of integration is further enabled by eliminating the need for a separate palliative clinic location and personnel. Furthermore, convenience for patients is increased by providing complementary services under one roof, optimally during the same visit.”

The authors cite another benefit of such a palliative-oncology collaborative -- its potential to lessen the burden on the care team.

Right to Die: "No authentic picture of public opinion"

The moral/ethical tug-of-war between autonomous choice and respect for human life is being vigorously and divisively engaged. That’s hardly breaking news. But aspects of the life-versus-choice debate are playing out loudly on multiple fronts.

In the United Kingdom, the Liverpool Care Pathway for the Dying Patient, a hospice-inspired strategy for appropriate medical care, is getting the “death panel” treatment, portrayed in some media as callously hastening patient deaths for economic and other reasons. In Canada, the Supreme Court will rule this spring on the authority of medical carers to decide when to remove a patient from life support. And in Rome, in words directed in part to legislators in Ireland, where a woman recently died from pregnancy complications after being denied an abortion at a Galway hospital, the pope has noted “with dismay that, in various countries, even those of Christian tradition, efforts are being made to introduce or expand legislation which decriminalises abortion.”

In the shadow of these evolving stories, and just two months removed from the narrow decision by Massachusetts voters not to make it legal for a physician to write a lethal prescription for a terminally ill patient, I came upon an instructive new study in the journal Palliative Medicine. The title: “Why do we want the right to die? A systematic review of the international literature on the views of patients, carers and the public on assisted dying.”

This study, led by Maggie Hendry and Diana Pasterfield of the North Wales Centre for Primary Care Research, is an impressive effort to get a sense of the range of values regarding assisted dying, in the form of physician-assisted suicide, euthanasia, or “accompanied suicide,” as practiced in Switzerland by Dignitas.

Some form of assisted dying is legally practiced in four European countries (The Netherlands, Belgium and Luxembourg, in addition to Switzerland), and three US states (Oregon, Washington and Montana).

Some proponents of legalizing physician-assisted suicide elsewhere in the United States anticipated Massachusetts as a bellwether, and the last-minute swing in support provided an interesting look at the pliability of attitudes. Polls just weeks before the November vote showed the measure supported by a significant majority. Was the reversal to a narrow defeat on Election Day indicative of how soft support or opposition can be on a question that puts life and choice into conflict?

The study of “right to die” attitudes found four themes in reasoning for and against: "concerns about poor quality of life,” “desire for a good quality of death,” “concerns about abuse if assisted dying were legalised,” and “importance of individual stance related to assisted dying.”

On the last theme, the authors wrote, “Some felt that only God should decide time of death. Others believed such decisions are morally wrong and could be equated with murder or interpreted the desire to hasten death as a sign of moral weakness. Some people saw death as part of a natural process that should not be interfered with, whereas others argued assisted dying could be morally justified to relieve suffering.”

According to the study, “The heated exchange about legalisation or de-criminalisation shows no sign of diminishing. There is a dearth of high-quality, unbiased evidence about the collective views of people that such a change in law might affect, and no authentic picture of public opinion is available.”

The study underlines both the need for clear policy on assisted dying, and the challenge in achieving that. “Importantly," say the authors, "the dichotomy between the views of doctors and the general public needs to be urgently explored.”

Defining Palliative Care

Palliative care is not well understood, so perhaps this definition the World Health Organization has published will help. 

The WHO definition reads:

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care:

• Provides relief from pain and other distressing symptoms.
• Affirms life and regards dying as a normal process.
• Intends neither to hasten or postpone death.
• Integrates the psychological and spiritual aspects of patient care.
• Offers a support system to help patients live as actively as possible until death.
• Offers a support system to help the family cope during the patients illness and in their own bereavement.
• Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated.
• Will enhance quality of life, and may also positively influence the course of illness.
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
• Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.

• The WHO site also features a definition specific to palliative for children.
• 
  

Knowing When (or Not) to Let Go

On the date and in the hospital where I was born 58 years ago, my friend was allowed to die. It’s what he had said he would want, it’s what the doctors said was occurring, and it’s what his family courageously and compassionately allowed.

My friend didn’t want the catastrophic stroke that had left his brain so badly and inaccessibly damaged. He didn’t want to die and leave his two daughters fatherless. But in the event of a catastrophic event, he didn’t want to exist unable to think, speak, or care for himself. And this was known because he had told another friend and a brother, who were able to communicate his wish when he was unable to, and in so doing helped others in my friend’s family to allow his passing, and not prolong it indefinitely and artificially.

I followed this story from the East Coast as it evolved in Southern California, and so I don’t have any real sense of the truth of decision-making after my friend’s sudden collapse and emergent bleak prognosis.

The timing was striking, not for the simple coincidence of his dying on my birthday, but because my work with Community Voices in Medical Ethics had me following the case of Hassan Rasouli in Ontario, Canada. 

Rasouli, 61, has been on life support since Fall 2010, and for much of that time he has been under the care of a medical team in dispute with his wife and adult children over whether to continue keeping him alive. (More here)

The medical team believes it should make the decision on whether to discontinue life support, even if the patient’s surrogates disagree, and is attempting to have a court establish that as legal fact. 

The day after my friend died, lawyers for both the medical team and the Rasouli family made their case before the Canadian Supreme Court, which will rule in a case with potential legal ramifications from the UK to the US. Cases concerning end-of-life medical care rarely make it this far in a legal system, because the patient rarely survives till the court date.

Which is a point the Rasoulis’ lawyer underlined with the Supreme Court in disputing that care is futile. “The treatment is 100 per cent effective,” the lawyer said. “It permits him to breathe.”

Lawyers for the hospital made this point: “The purpose of critical care medicine, including life-support measures, is to support the patient long enough to allow recovery from a reversible illness. Where, as in Mr. Rasouli’s case, there is no reversible illness from which he can or will recover, life-support serves no medical purpose.”

So who decides? In determining my friend’s fate, religion played a role in allowing him to be removed from mechanical life support. He was Roman Catholic, and as such would have considered human life sacred. The Rasoulis, devout Shia Muslim, no doubt would agree with that. And yet one man was removed from life support, the other remains on it. 

Community Voices, through its Community Ethics Committee, is just now concluding a lengthy study of medical futility, a phrase much simpler than all it is meant to imply. A determination of medical futility -- usually by the medical team, though sometimes by a terminal patient (who, for example, is ready to give up on chemo before the oncologist) -- usually results in agreement on revised goals of care. In the rare cases, though, there is not agreement. And then, who ought to decide?

This question is being asked all over the world, and is especially volatile now in the United Kingdom, where the hospice-inspired Liverpool Care Pathway for the Dying Patient is the focus of heavy scrutiny.

Given what I know of my friend’s death, what I’m learning about the Rasouli case and the controversy over the LCP, I found a blog written by Philip Berry to be illuminating. Berry is a writer and National Health Service consultant.

Berry wrote: “We don’t ask individual doctors about their religion – it is a personal matter. But religion and medicine are clearly interlinked, and this relationship is most apparent when decisions have to be made near the end of life. At this time religion can influence the expectations of patients and the management decisions of doctors. If a disparity exists between those two parties, and if the fundamental nature of belief does not allow one to accommodate to the other’s preference, conflict can occur.”

Berry explores four questions in particular: Do doctors vary in their practice according to religiosity? Is such variety acceptable? If not, should doctors have to disclose their beliefs to patients? And, should doctors disclose their beliefs in public debate on end of life issues?

He cites a poll finding non-religious doctors “40 percent more likely to sedate than religious doctors” and religious doctors less likely to “discuss end-of-life treatment option with their patients.”

“Variability is a fact of life, because all doctors are different and the practise of medicine cannot be completely protocolised,” Berry writes. “Medicine draws on human qualities from its practitioners, and the advice that each doctor gives is modulated by their own psychological and cultural make-up. We cannot expect or desire uniformity, for that would encourage doctors to perform at a remove from the very internal motivations that brought them to the vocation.”

Later, he adds: “If religion is driving much of the current argument about end of life care, we must ask ourselves to what extent these preoccupations can be allowed to influence national policy.”

Berry is a proponent of the LCP and more generally quality care for the dying. He is also an atheist, which doesn’t stop him either from noting that “Dame Cicely Saunders dedicated her life to the development of palliative care following a conversion from agnosticism to Christianity” or crediting the palliative movement’s role in making “the UK's reputation for the care of dying patients ... unsurpassed.”

As Community Voices tries to sort through questions of medical futility and possible ways to resolve the intractable disputes, our running joke is that our endeavor is itself an exercise in futility. But, of course, it’s not a joke, as I was reminded when my friend, as he had said he’d want, was allowed to die.

Why I'm Pulling the Plug on "Pulling the Plug"

I think I’ll ban “pull the plug” from my usage, much as I did years ago, as a journalist, and learned from Strunk & White that people, in print, ought never to “pass away.” They die. Simple and sad as that. Sometimes they die after they are disconnected from a ventilator, feeding tube or other life-prolonging measure.

I’m thinking about this as I begin research into the Liverpool Care Pathway, an apparently effective means of allowing a dignified death while keeping a patient’s wishes and best interests in mind throughout end-of-life medical care -- but which has become quite controversial. Some UK media seem to have gotten aboard the “death panel” band wagon in a big way.

But the reason “pull the plug” is on my mind is that it’s the phrase someone on the West Coast used to describe to me what occurred earlier this week to a mutual friend. He’d been on life support for more than a week, after he suffered a stroke and collapsed in his home. That damage to his brain is irreversible and, despite the suddenness of this catastrophic event, his family has accepted that he would not wish to continue life mechanically prolonged in a vegetative state. He had said as much to another mutual friend on more than one occasion. 

I’m sad for my friend and his extended family, and I admire them, and the friend who had the foresight to engage in the conversation about values. I know nothing of the dialogue that has taken place with doctors in making the decision to allow him to die, and perhaps the decision was easy to make, relatively speaking, and it was clear to all that there would be no recovery of any meaningful kind. And yet my friend is from a Catholic family, as am I, and agreeing to the removal of life-sustaining technologies and forced nutrition is no simple step.

When I learned of my friend’s fate, I had just read for the second time UK physician Max Pemberton’s recent piece in The Telegraph, “The Liverpool Care Pathway Leads Away From Pain.” There’s no telling how many times I’ll read it before I’m through. I want to know it by heart. It’s that good.

The Liverpool Care Pathway strikes me as the sort of thoughtful and bold approach to care at the end of life that is very much needed in the United States, especially for those for whom the dying process is prolonged and full of uncertainty.

It needs to be thoughtful because, well, it’s about care of the dying, who have a way of surprising us and not dying when we think they will, and whose own wishes for how they die, if known, can range from "do everything to keep me alive" to "if I'm a vegetable, let me go quickly." And it needs to be bold to overcome the “death-panel fear-mongers,” to borrow a phrase from a recent New York Times editorial. (A thoughtful and bold editorial, I might add.)

Such fear-mongering isn’t unique to the U.S. Indeed, Pemberton’s piece is in part rebuttal to coverage that has made the Pathway out to be more about economics than compassionate care, which, if true, would indeed be unfortunate. It does appear that in some cases, consent was not well informed (good communication shouldn’t be a speciality in medicine). Lawsuits have been filed, and an independent inquiry is under way. (More here)

The Pathway has in some UK media acquired the nickname “death pathway,” which is not meant as a compliment. But my sense is that the Liverpool Care Pathway has a lot more to do with compassionate care and dignity in death, and Pemberton makes this case well.

Also worth reading regarding the Pathway, and the key role nurses play in making it work, is a story in NursingTimes.net. The author, like Pemberton, writes of personal experience with the Pathway, and one notably helpful and compassionate palliative nurse in particular. 

“The LCP is not the problem, but its implementation, in some cases, is. Those cases are entirely unacceptable and should face the full fury of the media and patients when they happen,” writes health journalist Shaun Lintern.

“Nurses grappling with life and death issues face incredible pressures; you go into this job to save lives, not to watch them fade away. One possible reason for the lack of communication with some families could well be a reluctance of some nurses and junior doctors to have those incredibly tough conversations with patients and families.”

I'm grateful that this does not seem to have been the case with my friend and those in the thankless position of speaking for him about how he'd wish to die.

Mayo Clinic's Advice on EOL Dialogue

The Mayo Clinic has come up with these guidelines for engaging dialogue on end-of-life medical care:

Clear communication: Early and clear communication between health care providers and patients or their surrogates is the best way to avoid disagreement over whether medical care should continue. Recent studies show that more than 95 percent of such disputes are resolved through mediated meetings involving physicians and patients/surrogates.

Choose objective surrogates if patients cannot represent themselves: The surrogate's role is to stand in the shoes of the patient and suppress his or her own judgment in favor of what the patient would have done. However, it is important to acknowledge that medical surrogates often struggle to balance their wishes for the patient with the patient's own wishes. Studies have found that not only do many surrogates fail to accurately predict a patient's treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient's desire for continued treatment.

Involve third parties when necessary: When health care providers and patients or their advocates cannot agree on end-of-life care, involving a third party becomes necessary. Beginning in 1992, the Joint Commission, the largest hospital accreditation organization in the United States, required hospitals to establish procedures for considering ethical issues. Hospital-based ethics committees have been the most common response to this requirement.

For more on Mayo work in this area, see http://www.mayoclinic.org/news2012-rst/7183.html

Eaves-Tweeting (the Future of Medicine)

Interesting recent tweets discovered via hashtag:

1. Medical team of future will be more flexible, female, more team-based, more non-medically trained. (#futurehospital)

2. Does fear of litigation / defensive medicine drive rising demand for secondary care? How can this be addressed? (#futurehospital)

3. Forty percent of young physicians report that they would not go to medical school if given the choice again. (#meded)

4. Why Would Anyone Choose to Become a Doctor? Because they can have the great privilege of doing palliative and hpm. (#palliative, #hpm)

5. Drug reps should not be welcome ... and the doctors working there shouldn't be on industry payrolls. (#futurehospital)

6. Educating your patients: it's not just about a brochure; it's about initiating a dialogue (#meded)

7. Over a quarter of medical registrars are concerned their workload is unmanageable. (#futurehospital)

8. You ARE a person. You HAVE a DNR order. You are not your code status. (#palliative, #hpm)

9. With hospice, people believe you're giving up instead of helping to transition or die w/ dignity (#hospice)

10. In my view issue of prognostication is a red herring. Will always be subjective. Issues of communication and education are vital (#LCP)

Eaves-tweeting (Boise hospitals)

Saturday’s New York Times story headlined “A Hospital War Reflects a Bind for U.S. Doctors” inspired interesting dialogue and commentary on Twitter. See the original story here. The story tells of how the national hospital efficiency trend is playing out in Boise, Idaho.

As the Times reported, “Boise’s experiences reflects a growing national trend toward consolidation.”

Here’s a glimpse of the reactions on Twitter:

Atul Gawande ‏@Atul_Gawande

On the Boise battle: 1. W/o transparency about quality, Big Med, under fee for service, produces more care & cost.

Paul Levy ‏@Paulflevy

@Atul_Gawande Agree that transparency is key. How setting an example in Boston with real-time metrics, not 2- to 3-year old data?

Atul Gawande ‏@Atul_Gawande

2. To produce real teamwork for patients, we're switching to Accountable Care--i.e., lump sum payment--which makes Big Med necessary.

Paul Levy ‏@Paulflevy

@Atul_Gawande And it doesn't matter if it is fee-for-service or global. Overall price levels rise when monopolies take charge.

Atul Gawande ‏@Atul_Gawande

3. There's a chicken-and-egg problem here, therefore. Change payment systems first and then bring in consolidation (#BIgMed)? Or vice versa?

Paul Levy ‏@Paulflevy

@Atul_Gawande Focus on payment model is misplaced when monopolies exist, e.g., Partners gets higher global AND fee for service rates.

Atul Gawande ‏@Atul_Gawande

4. In the meantime, without real data about actual quality and cost--i.e., transparency--everyone's flying blind.

Ann Neumann ‏@otherspoon

NYT article on hospital mergers; No mention what Catholic expansion means for patient services.

For a different perspective on the modern efficient hospital, see Dr. Victoria Sweet’s powerful book, “God’s Hotel” (blogged about here).

The Wisdom of a Dying Physician

Viewed from this side of the Atlantic, the controversy playing out in the United Kingdom over the Liverpool Care Pathway is as familiar as it is perplexing. It is in the United States, after all, where certain politicians and media have made it controversial for Medicare policy to pay physicians to discuss their end-of-life wishes with patients. This makes no sense, discouraging literally vital dialogue, and making it more difficult for physicians to built relationships of trust with patients.

Don’t take it from me. Listen to Dr. Kate Granger: “It is not fancy technologies or complicated research that is going to fix the problem. It is quite simply some good quality talking and a culture and environment that allows this to happen.”

Dr. Granger is a physician in the United Kingdom. But she is also a patient, one with a terminal cancer diagnosis, “musing about life & death” on her Wordpress blog.

She writes: “One of the reasons I have been so open about my own dying both in public and in private with those I love is that I believe openness is inextricably linked to achieving ‘a good death’ and perhaps more importantly ‘good grief’ for those left behind.”

Most recently, Dr. Granger has become troubled by a spate of negative press coverage in the UK about the Liverpool Care Pathway, a widely adopted means of addressing the wishes and best interests of a dying patient that has been around for a couple of decades, but has only now become controversial. It has been irresponsibly cast, in terms that will be familiar to followers of America’s “death panel fear-mongers,” essentially as a vehicle of patient abandonment for financial reasons. It has become known to some media as the "death pathway."

Dr. Granger writes of “a perception more and more that everything done in the (National Health Service) is underpinned by monetary factors, bed pressures and lack of resources and that these issues motivate us as doctors rather than our patient’s best interests.” This, she writes, is “something I find very sad as I go to work primarily to look after people.”

As Dr. Granger notes, it would appear that recent failings of the LCP stem not so much from the program itself, which has an impressive record of compassionately allowing terminal patients to die, as desired, with dignity and at home. The failings are in communication.

“The irresponsible handling by some of the media has left us as clinicians in a hugely difficult and worrying place,” she writes. “As a doctor I would hope that the relationship I have with my patients and their families is based on a solid foundation of trust; a trust that I am there solely to act in their best interests and to care for them. As a patient myself I trust my own GP and Oncologist implicitly. But when the press and sometimes the politicians start to undermine this trust then we are left in an extremely worrying and dark situation.”

Dr. Granger’s solution: involving palliative care specialists earlier. As in the US, palliative care has been shown in the UK to improve quality of life for a terminal patient, and even to add time.

“I do not believe the problem itself has anything to do with the actual LCP,” Dr. Granger writes. “I think the solution is really very simple and yet difficult to achieve. When someone is diagnosed with a condition that is going to limit their lifespan such as heart failure, dementia, metastatic cancer or MND for example I believe early, open and honest discussion about prognosis is a necessity. This allows the patient choice and some degree of control over what will happen in their life.”

And communication with a patient is just one aspect of the palliative speciality.

“In my model the Palliative Care practitioner would be in the clinic when the patient is first diagnosed and work in partnership all the way with that patient,” Dr. Granger writes. “I am reminded of a quote from Dame Cicely Saunders, the founder of the hospice movement: You matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.”