GeriPal - Geriatrics and Palliative Care Blog

Thursday, July 29, 2010

The Americans With Disabilities Act: Happy Birthday!

This week, we are celebrating the 20th anniversary of the Americans With Disabilities Act (ADA). The ADA was historic civil and human rights legislation. It has opened doors for education, jobs, and opportunities for full participation in society for persons with disabilities. We are a better country because of the ADA.

It is sometimes a good thing when what was once viewed as noble or enlightened behavior loses that status and becomes expected behavior. Once upon a time, if the best applicant for a job had a disability, it was considered noble or enlightened if the employer hired the applicant and made accomodations to make it possible for them to work. The ADA makes such behavior expected---it is the law of the land. It is an obligation of an employer to make reasonable accomodations so that a disabled employee can do the job they are qualified to do. It is an obligation of citizenship to make accomodations so that those with disabilities can rise to the heights of their talents.

The ADA is something that makes me proud of my country. Happy Birthday!

by: [ken covinsky]

REALLY Letting Go: Beyonde Gawande

by: Brad Stuart MD

Atul Gawande’s brilliant essay in the New Yorker sums up the dilemma we face, whether we’re patients, families, and/or clinicians, as we near the end of life. His point is that we have to face it together:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come – and to escape a warehoused oblivion that few really want.”

What does that statement mean? Let’s break it down. We doctors and nurses have to be willing to sit down and talk about the unspeakable – fine. Then we have to talk from our experience: that medical technology provides diminishing returns as we near death together. Again, no problem, assuming the patient is willing to go there. Many aren’t, including Sara Thomas Monopoli, Gawande’s main character. Remember Dr. Desiree Pardi, the dying palliative care physician who wouldn’t let her colleagues in the room? She wasn’t ready either. It takes a rare kind of leadership to lead people where they deeply, seriously believe they don’t want to go. Well, that leadership may be rare, but more and more of us are cultivating it. Finally, we have to “help people prepare for what is to come.” Now there it is: the crucial element, and, for all of us, I believe, the real problem.

So, for those with advanced illness, what is to come? Death, at some uncertain point in time. Prior to that, loss of everything: possessions, family, friends, control. Preceding that, as Susan Block notes, is fear of the worst kind. Primal, ultimate, universal fear. This fear is precisely what Sara and Desiree, as well as many other patients and clinicians, not to mention our entire society, don’t want to confront. However, we doctors and nurses confront it, in fact welcome it (at least we should), at every family meeting. This fear has 6.5 billion faces, as many faces as there are people threatened with death. That is, all of us.

How should we deal with this fear? What’s missing from this discussion is also missing from the usual clinical encounter, because it’s missing from medical training, because in turn it’s missing from our culture. Let’s face facts: as a tool for dealing with dying, scientific knowledge has failed us. Doctors talk tech, patients talk life. Like the old song says, we have got to get it together, right now.

Confronting fear, and then moving through it, takes preparation. You can only help prepare the dying (all of us) for what is to come if you’re already prepared within yourself. But that requires inner work of – dare I say it? – a spiritual nature.

Fortunately, other gifted and generous people have shown us the way. The awe-full mystery of mortality has been confronted many times throughout history in many cultural settings. Inner work, it turns out, pays off. Answers have been found, not through scientific study but through a transcendent personal understanding of the paradox and mystery of life and death. Not through analysis, but through synthesis.

Just as Gawande uses stories to bring his points down to earth, others have also done in an attempt to illuminate the ultimate mysteries. Jacob wrestled in his tent with the angel all night, earning its blessing but also its lifelong wound. Jesus wrestled in the garden with his Father all night, asking that the bitter cup be taken from him but finally accepting it as his own destiny. Mohammed fought the holy war within, and won only when his soul submitted completely to the will of God (this being, by my reckoning, the real jihad). Buddha confronted the horror of illness and death and transcended it by realizing at the deepest levels of consciousness that there is no boundary between self and world, life and death; in fact, there is no self. In this light I often wonder, as I watch someone REALLY let go at the end of life, whether I’m blessed to be partaking of a process that looks very much like Zen enlightenment.

Please don’t think that I’m advocating religion, or even “spirituality,” as a methodology for solving the problem we have with dying. These stories are just roadmaps, not ends in themselves. Many of them are outmoded. They no longer fit our worldview; new ones are needed. Anyway, our outer-directed culture has concretized these teachings so that they have dried out into lifeless husks that are often useless to those of us who confront death. What lies beneath these stories is what we really need. Under the ground of these teachings flows the water of life. We must dig the well with our own hands in order to drink from this spring.

We need to let go of the delusion that our minds can possess ultimate knowledge. This error, embodied in our death-denying health care "system," is a cruel and expensive hoax when it's carried through to the end of life. Science, and scientific medicine, cannot play savior to the dying. There is no "theory of everything" that will ever keep the body alive indefinitely, or satisfy the soul when the body fails, as someday it must.

We need something more like wisdom: a vital, living wisdom that is the product of an inner process that each person must pursue individually to become fully aware. The process we must undergo to be truly helpful is the work of confronting our own fear of annihilation, our own personal demons, our own pain from losing so many people we have loved. What else would cause doctors to lie about prognosis to the patients they have known the longest?

We need to stop lying, of course, but that, as Gawande notes, is extremely hard to do in the face of desperation. There is a way, but it takes time and effort. We need to develop the requisite clarity of mind and heart, to summon the courage, to grow the compassion. Only then can we tell the truth to people who are suffering and scared, and deal constructively with the consequences. Only then can we truly help people prepare for what is to come.

The impending train wreck of US health care is forcing us at last to confront the limitations of life. As Gawande might say, we have met the problem, and it is us. But we are also the solution. Let’s go beyond the dilemma. Let’s talk, openly and honestly, doctors, nurses, patients and families, about how we can handle this together. Let’s get comfortable with the notion that some things just can’t be fixed, and in an ultimate sense, that’s fine. Let’s find out together what’s on the other side of despair. Let’s make self-awareness a goal of medical training. Let’s let in the deep grief and profound joy that dawn in us as one unified experience when we allow ourselves to be truly present with suffering. If we do the REAL work of letting go, the system will take better care of itself, and of the dying, because it will finally have come alive.

Atul Gawande New Yorker Article "Letting Go"

I want to draw people's attention to a fantastic new piece in the New Yorker by Atul Gawande titled, "Letting Go: What should medicine do when it can't save your life?" The stories told are raw and emotional, and offer glimpses into the struggles of patients with life-threatening illnesses, family caregivers, nurses, and physicians. The hospice nurse in the article is both empathetic and very direct at the same time, in a very Boston sort of way. I was trained by the physicians mentioned in the story (Block, Marcoux, Morris, Nowak, and even Gawande for a day). These are some of the best physicians in the world. And yet these stellar physicians - including Susan Block, perhaps the world's foremost communication specialist - struggle to talk with patients and family members about the one clinical event everyone is 100% going to experience: death. Gawande does an outstanding job weaving patient stories, research findings, and health policy with the inner perspectives of physicians and nurses. He gives the richest and most heartfelt account I have seen of the current state of the national convesation on death, difficult conversations, costs of care at the end-of-life, and quality of life. I recommend that everyone read it. Please share your thoughts in the comments.

by: Alex Smith

Notes from the Field: Getting Older in the Developing World

I arrived in Chiapas, Mexico, one of the most southern states in Mexico three days ago. Known as one of the most indigenously and linguistically diverse states in Mexico, it is also one of the poorest. Chiapas is also well-known for being at the center of the Zapatista uprising during the 1990s with the hope of urging the Mexican government to grant land rights and improve living conditions for the poor in Mexico. Today, many of the communities in Chiapas maintain their independence and continue to declare sovereignty and freedom from governance by whom they consider to be their oppressors.

I came to Chiapas to work in a small rural hospital run by nuns from the St. Vincent de Paul Society. Before coming here, I did not know whether my skills as an Internist and Geriatrician would be of use. Certainly, the median age tends to be low in many parts of the developing world, including in Latin America. Yet, the demographic transition is continuing to occur all over the world. According to the World Health Organization, the concern is that “developing countries will become old before they become rich while industrialized countries became rich before they were growing old.” In addition, the UN reports that 59% of people over the age of 65 now live in the developing world, and the UN anticipates that by 2020 there will be 698 million elderly people, as this population will nearly double from 1965 and 2020.

In this hospital, I can see the demographic shift before my very eyes. The elderly are by no means the majority, but they comprise a fair number of the admissions to our inpatient units. On my first day of the internal medicine wards, I was pleased to have 2 patients approximately in their 80s, and 5 patients in their 60s. In these communities, determining age proves to be somewhat difficult and often ends up as an estimate given that many do not have birth certificates. Similarly, keeping track of the passage of time is not as crucial for patients; this in turn, makes history taking and age determination difficult. Even without exact ages, many patients appear much older than what their true chronological age would suggest.

I was not sure what sorts of illnesses I would encounter knowing that much of Mexico still struggles with controlling endemic infectious diseases. To my surprise, the majority of the 60+ year old patients were admitted for uncontrolled diabetes and their associated infections. But a few patients have had some unusual presentations, unusual differentials, and ultimately complex management decisions given our low resource setting.

Many of the 60+ and 80+ year olds were admitted with urinary retention and associated urosepsis, and sometimes fecal impaction. Alas, diagnoses I am all too familiar with! Urinary retention in women is surprisingly common. Though I have not been able to find review articles on this phenomenon, after a discussion with local physicians, it seems that the most likely etiology is anatomical given the high birth rates and associated birth traumas that may leave women with urethral strictures and cystoceles. However, the difficulty in treating these conditions here lies in having virtually no surgical subspecialties, being unable to diagnose exact causative organisms given inability to culture, and similarly, being unable to diagnose and treat electrolyte disturbances given no lab equipment for full chemistry panels. Yet remarkably, sometimes time gives us the answer, and delirium prevention and management can be done without fancy tests and equipment. In fact, maybe it is better that there are no bed rails or restraints available!

Two days ago, we admitted a woman with such profound sepsis that she began to show neurologic changes which made us worry about hypoactive delirium +/- a new cerebrovascular event. She was barely responsive and seemed to show signs of lateralizing as she wouldn’t move one side. Given her age, but being unable to scan her head, we wondered if she had an old stroke whose deficits were becoming apparent, or whether she was having a concurrent new cerebrovascular event. The only somewhat objective data we had was that she had had some GI symptoms approximately in the last week, and our lab results showed a leukocytosis and positive urinalysis. Antiobiotics and fluids were initiated, and a few hours later, she began to wake up and show signs of hyperactive delirium. But the next morning, she looked 100 times better. She was eating, starting to sit up, and starting to talk with her family. The answer? Her family had very kindly saved us what she vomited over night: two 10 cm ascaris worms. This is definitely my first time documenting ascaris as a precipitant of delirium, but I have certainly learned that in the elderly, any infection or change in baseline health status can cause delirium.

Another patient whom I came to know, but who was admitted prior to my arrival presented with signs of stroke (unclear if hemorrhagic or embolic) which resulted in dysarthria and urinary retention but minimal other deficits. Amazingly, this woman also has a long history of being blind, yet has been able to maintain her independence in her ADLs while living at her home with her family. We have no resources here for speech therapy, low vision therapy, or additional rehabilitation. But what we could do for her were simple interventions which were similar to would be done in resource-rich settings. During the days that she remained in the hospital, I worked with her family to ambulate her several times daily to prevent any further functional decline. The biggest obstacle to discharge was her new urinary retention. Given the difficulty of having access to clean water and supplies, I worried about sending her home with an indwelling foley, noting that she would likely return with urosepsis. She had had a foley catheter for a week and every time it was removed, she retained urine. What we did was simple…we put her on a bowel regimen recognizing that constipation was contributing. We worked on timed voiding trials and used only straight cath when she was unable to void. One day later, she voided spontaneously. She was able to go home with her family and with instructions to continue timed voiding.

Though it seems that being in a low resource setting limits what we are diagnostically and therapeutically able to do, in many ways, these limits prove to be beneficial, if not favorable to a frail elderly population. When it was suggested that our frail 78 yo woman with chronic diarrhea, urine infection and cachexia undergo a colonoscopy for work up of chronic diarrhea, I was greatly relieved that this service is hard to come by and requires referral and approximately 200 dollars—something difficult for many patients. Similarly, I have been thankful that all of my patients have been on few or no medications—thereby limiting the risks of polypharmacy. When patients are clearly dying, this process is allowed to happen naturally, rather than artificially extending lives or offering treatments that likely will not be life saving.

There’s a limit to what we do, and this is something I witnessed when a 64 yo woman was brought in virtually pulseless. We made attempts at treating reversible conditions by using antibiotics and briefly using medications that are considered resuscitative. But when it became clear that she was not responding, we allowed her to die and did not prolong her death.

At this hospital, patients and their families do not pay if the death happens in the hospital. In general, if it is clear that a patient is dying, or if there are truly no curative treatments, patients are rarely admitted to the hospital. Mostly, they are encouraged to die at home with family. In general, this seems like a reasonable idea—to die at home with family rather than in the hospital. But I wonder if this in part driven by the fact that patients will not pay for the hospitalization if they die there, or if it is also due to a different conceptual framework. I consider a part of my work as a physician to offer cures when I can, and to extend life when patients believe there is still “quality of life.” But just as importantly I know that I will also help alleviate suffering at the end of life. This is why it is hard for me to hear physicians tell patients and their families: “there is nothing we can do.” This in fact, is never true. There is always something we can do to alleviate pain and suffering even when we cannot cure diseases. I do not want to change the practice of dying at home which seems to be prevalent and accepted here. However, I do hope that we can be comfortable in our role as healers, and help patients and families accept the dying process when we reach a point where we cannot offer curative treatments. While we are limited in our access to opioids and other controlled substances, we can still offer support to families, and some relief of symptoms for patients.

After a week of working here in Chiapas, I am not sure which health care system I prefer as there are benefits and gross deficits in both the United States and here in this rural part of Mexico. The system in the United States in many ways is inequitable as not everyone has access to the same level of care, but there are usually more treatment options if one desires. This seems ideal for individuals with good functional status who want a chance of improvement or a chance at receiving evidence-supported therapies. But here in Mexico, care may be just as inequitable as in the United States. Because of limited resources, some therapies may need to be rationed. But this has all made me wonder if it is better to get older in a setting with fewer resources, where one will not have the opportunity to have too many interventions, or too many medications. Instead, aging may become an accepted and natural part of life. Similarly, within reason, the comorbidities associated with aging are not constantly battled, and death is considered another stage of life.

Don't try this at home

"Don't try this at home," said Steve Pantilat, the director of our palliative care fellowship to the new palliative care fellows. It's July, and the new fellows are learning communication skills. "Communication skills that work well for breaking bad news and family meetings rarely work well at home."

He's absolutely right. I have occasionally attempted to use some communication techniques I learned in palliative care training at home with my wife, with disastrous results. In my case, I usually try these techniques when I'm trying to get out of trouble for something (like not paying attention).

I created this video, called "take out the trash" for all of the spouses and partners who have endured when we talk like we are running a family meeting at home. We love you!

For the "communication experts" out there - see if you can spot "Ask-Tell-Ask," NURSE (Naming-Understanding-Respecting-Supporting-Exploring), and the "teach back" method.

I have to credit the inspiration. My wife showed me this hilarious video of an orthopedic surgeon talking to an anesthesiologist.

by: Alex Smith

Why not palliative oncology?

WHY NOT PALLIATIVE ONCOLOGY?

The goal of palliative care is to relieve symptoms, reduce suffering and improve a patient’s quality of life. In palliative oncology chemotherapy and radiation are used, not for a logarithmic cell kill, but to resolve specific problems caused by the cancer. Thus the focus of palliative oncology differs from its more aggressive traditional role. Here intent is the key difference; “curing” versus “healing”. Until recently the primary objectives of oncology had been summated in the following adage.

“Foremost to cure,
If no cure then to control,
If no control then to palliate”

With the advent of hospice and palliative care, palliative oncology should no longer be an issue of giving more and more pain medication. Chemotherapy and radiation can be administered, albeit at lower dosages and shorter schedules, for the purpose of reducing or eliminating symptomatic tumors. In short, palliative oncology can reduce the symptoms, suffering and pain medication requirement by controlling the cancer.

The primary targets of palliative oncology are these symptoms categorized below.
Compression; of nerves, vessels and lymphatics which can lead to neuropathies and limb edema / thrombosis. The application of radiation focally or chemotherapy for multiple-site effects can decrease pain and swelling. An example of this would be the administration of 30 Gy / 10 fractions in the treatment of spinal cord compression or carcinomatous plexopathy.
Hemorrhage; as with a cancerous skin wound can have radiation applied for as little as 250-800 cGy per fraction daily. This can stop weeping in a few days. It can also sclerose most bleeding vessels though its efficacy decreases as the target vessel becomes larger.
Obstruction; as with a hollow viscus chemoradiotherapy can be given to reduce tumor obstruction, thereby allowing a stent placement and hopefully obviating the need for a diverting ostomy.
Pain; and by this I mean intractability to medical management. Under circumstances where a growing cancer is causing increased pain it may only be a stopgap measure to increase a patient’s morphine or methadone, or to add adjuvant medications. With as little as 800 cGy / 1 fraction, for example, pain relief can be achieved and the radiation can be repeated later if necessary.

In the setting of metastatic ‘solid’ tumors palliation is always the main course with quality of life as the primary goal. For metastatic cancer the consensus of a European expert panel determined that the goals of (palliative) chemotherapy are to obtain maximum control of symptoms, prevent serious complications and increase survival without diminishing quality of life. (1) Palliative treatment should control disease in at least 20-30% of patients with an acceptable side-effect profile. The patient’s quality of life also seemed to fare better when personal issues were considered such as oral (versus intravenous) therapy, home (versus clinic / hospital) treatment and regimens designed so as to prevent or at least decrease the risk of hospitalization. Furthermore, the overall costs of home-based and oral-based chemotherapy are less than their traditional counterparts.

In the metastatic setting when a ‘cure’ is no longer obtainable the patient’s involvement in their quality of care becomes just as important. When offered second-line chemotherapy for advanced breast cancer patients were more likely to proceed with treatment due to the HOPE that the chemotherapy offered and, additionally, were most likely to take an active role in their treatment (than did women offered first-line chemo). They did so even though their expectations for a ‘cure’ were diminished. (2, 3, 4)

Palliative oncology typically involves adjusting or titrating regimens to fit the patient’s needs (eg improve the quality of life). Our standard chemotherapy regimens can be amended to provide maximal palliative effect with minimal toxicity, no matter what the patient’s status. This was recently echoed at the university level; “physicians at Moffitt have demonstrated that chronologic age poorly reflects physiologic age and that cancer treatment needs to be tailored to the individual patient”. (5)

Palliative oncology proffers a new point of view. Isn’t using chemotherapy and radiation for palliative care just as important as its use for cure? Do we dwell too much on new pain medications when we could offer our cancer patients these alternate ways to reduce their suffering?

References;
1. Crown J, Dieras V, Kaufmann M, von Minckwitz G, Kaye S, Leonard R, Marty M, Misset JL, Osterwalder B, Piccart M: Chemotherapy for metastatic breast cancer – report of a European expert panel. The Lancet Oncology. 2003;3:719-726.

2. Grunfeld E, Maher EJ, Browne S, Ward P, Young T, Vivat B, Walker G, Wilson C, Potts HW, Westcombe AM, Richards MA, Ramirez A: Advanced breast cancer patient’s perceptions of decision making for palliative chemotherapy. J Clin Oncol 2006;24(7):1090-1098.

3. Matsuyama R, Reddy S, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol 2006;24(21):3490-3496.

4. Harrington S, Smith TJ: The role of chemotherapy at the end of life. JAMA 2008;299(22):2667-2678.

5. Extermann M. Senior adult oncology program. Moffitt Cancer Center / USF. June 2009.

by: Robert Killeen MD

3 Issues of Hospice

by: Robert Killeen MD

Three Issues of Hospice

I’d like to address three recurrent problems I’ve found in the field of hospice and palliative care. These three issues span our patient population regardless of their gender, race or economic stance. I would like to share the ways I view and approach these difficulties both as an oncologist as well as a hospice doctor. I hope that these perspectives are as helpful for the readers as they have been for me.

1) What is the “right” answer?
With hospice and palliative care I’ve come to accept and advocate that there is no absolute ‘right’ answer. This question plagues the patient and especially their loved ones as they try to address what course of action to take in hospice and palliative care. What I try to instill in these folks is the question of what is the ‘best’ answer. I work closely with them to discover, to reach, the main problems the patient is having and what is the ‘best’ way to resolve them. I focus their attention to the fact that there are a variety of ways to approach a problem and resolve it but that some ways seem better, easier or more tolerable than others. This is not deceptive in that I am not discounting treatments as right or wrong but, rather, as best, better or least helpful. As an oncologist I’ve seen many a patient undergo chemotherapy where the patient suffered worse than the tumor. Although the chemotherapy was ‘right’ in terms of tumor reduction it clearly wasn’t ‘best’ in terms of patient care. The wording, the ‘label’, is most important. As a recent GeriPal article concluded the ‘label’, the language of hospice and palliative care, can cause both inspiration and trepidation (1). Knowing that there is no ‘wrong’ answer may be the ‘best’ way to help a patient and their loved ones feel more comfortable with the choices they’ve made. It relieves their anxiety and may help to lessen their depression.

2) The fundamentals of depression.
Depression appears when people feel they no longer have a ‘handle’ on things, they’ve lost control. They may view their referral to a hospice as medical abandonment; their PCP or oncologist has given up. This invokes the terrible concept of “medical futility”. They dread the words “there’s nothing more to be done”. But nothing could be further from the truth. One of the first defenses to this depression is confronting it. Discover with the patient all the things making them feel helpless and hopeless. Then emphasize all the things they may not see, their options (2). Many times the patients have the ability to confront their problems; they often require only information to make their decisions. Patients are more likely to devote intense effort to their care at this stage in their lives (3,4). They have a myriad of medications to choose from for pain, nausea, vomiting and appetite – to make life better. Chemotherapy and especially radiation should not be viewed as contraindicated but rather as useful modalities in treating problems such as painful bone lesions or obstructive lymphadenopathy. Once patients see their many options and become more involved they may feel more in control of their lives and their depression should lessen if not abate entirely.

3) The dispersal of anguish.
A common issue I’ve come across in hospice care is that of personal anguish. The situation typically involves a single family member who acts as the power-of-attorney or the health care surrogate and must be encumbered with the responsibility of deciding life or death issues with regard to another relative. Some people find this burden unbearable and this anxiety leads to hesitancy, apprehension and the thought that their actions could be harming the patient. They’re not certain if what they advocate is what the patient would truly want. What I try to do in this situation is attempt to get the family (and even close friends if possible) of the patient and surrogate to be around them and to help them reach a consensus. This is especially helpful if the surrogate is undecided. This helps to relieve the surrogate of some of the personal sense of responsibility for the decision. They become something close to a final arbiter. They weigh their own thoughts of what the patient would like with the consult of others. They make the decision commensurate with what the family, the patient’s own personal community, feels. This approach, however, is least likely to work if the family is self-absorbed rather than patient-focused.

References;

1) Villars P. Maintaining relationships: stop using the words ‘terminal’, ‘dying’, ‘hospice’, ‘advance directives’ and ‘bereavement’ that push others away. http://www.geripal.org/2010/03/maintaining-relationships-stop-using_09.html 3/9/2010.

2) Wenger NS, Vespa PM. Ethical issues in patient-physician communication about therapy for cancer: professional responsibilities of the oncologist. The Oncologist. 2010;15(1):43-48.

3) Harrington SE, Smith TJ. The role of chemotherapy at the end of life. JAMA. 2008;299(22):2667-2678.

4) Matsuyama R, Reddy S, Smith TJ. Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol. 2006;24(21):3490-3496.

Call for Submissions: 2011 Educational Exchange at AAHPM

Back by popular demand!
The Educational Exchange
at the

Annual Assembly of the American Academy of Hospice and Palliative Medicine

(AAHPM) will be back in 2011!!

Don't miss this great opportunity to share your scholarly work in education while enjoying the beauty of Vancouver in February, 2011.

2011 Educational Exchange - Call for Submissions
Abstract submissions are now being accepted until this Friday, July 16, for the 2011 Educational Exchange at the 2011 AAPHM and HPNA Annual Assembly in Vancouver. This session, "An Interactive Educational Exchange: Sharing Innovative Teaching Materials and Methods," first presented at the Annual Assembly in Boston in 2010, provides a structured, interactive, and hands-on forum for palliative care educators from all disciplines to present, share and exchange materials and methods from model educational initiatives, including curricula, program development, educational process, assessment tools, online materials, and research in teaching and evaluation.

Submission information and materials can be found at http://www.aahpm.org/.

All submissions should be emailed to aahpm.edexchange@gmail.com by 5PM PT on July 16, 2010.
If you have questions, you can contact us at the submission address above or through our individual e-mail addresses below. We’re looking forward to seeing you there!

Sincerely,The Educational Exchange Session Faculty
Laura J. Morrison, MD, Baylor College of Medicine and The Methodist Hospital; lmorriso@bcm.tmc.edu

Elise Carey, MD, Mayo Clinic; carey.elise@mayo.edu

Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C, City of Hope National Medical Center; sotis-green@coh.org

Pamela Fordham, RN, DSN, CRNP, University of Alabama-Birmingham; fordhamp@uab.edu

Management of Mucositis: Requesting Your Wisdom

I am hoping to get some advice from our Palliative Medicine expert readers on a problem that seems really vexing. Over the past year or so, we have admitted a number of patients on our inpatient service with chemotherapy (or XRT) related mucositis-- A very painful inflammation of the mucous membranes in the mouth and throat.

I can only imagine how awful this must be. When I have had small localized apthous ulcers (canker sores), I have found them to be difficult and painful---more distressing than one would expect from somthing all the textbooks call a very common benign problem. I can't imagine what it must feel like to have the equivalent of one of these ulcers over the whole mouth and throat. The patients I have seen with mucositis are miserable. They are in pain, and it hurts just to talk or eat. In fact, it seems many develop additional complications because the pain prevents them from eating and drinking.

I have not found our treatments for mucositis to work very well. It seems patients suffer a great deal till the episode runs its course. So my question for our Palliative Care experts:

How do you treat chemotherapy related mucosits? Do you have any remedies that you have found successful and helps your patients through these episodes?

by: [ken covinsky]

What are the options when older persons can no longer live independently at home and need long term care? Many would say nursing home care. However, over the past decades, several alternative options to nursing home care have emerged.

One alternative to nursing home care is PACE -The Program for All-Inclusive Care of the Elderly. Based on the On Lok Model developed in San Francisco, PACE provides a comprehensive set of medical and social services that are managed by interdisciplinary teams based in adult day health centers. These services make it possible for most PACE patients to stay at home. PACE is only available in regions that have PACE centers.

Another option, available in almost states are Medicaid waiver programs in which elders are provided a case manager who organize the provision of inhome personal and supportive services. These services are aimed at keeping the elder at home. Resources that would otherwise go towards nursing home care support these services.

Given the enormous resources spent on long term care, and its importance to well being in the frail elderly, you would think there would be a multitude of studies to determine which types of long term care result in the best outcomes. Amazingly, there are very few studies, and we know virtually nothing about the impact of different long term care choices.

This makes the recent study by Wieland, published in July issue of the Journal of Gerontology, very timely. Wieland compared survival over 5-years in South Carolina frail elders who enrolled in each of the 3 options: Nursing home, PACE, or the waiver program. In South Carolina, patients enrolling in any of these programs were required to undergo a common evaluation process to assure they met criteria for nursing home placement. This made it possible to do this study, as it assured all elders could have been enrolled in any of the 3 options, and it made a common baseline data collection on all elders possible.

One issue with this type of comparison is that it is possible sicker higher risk elders will selectively enter one of the programs. If this were the case, elders in that program could appear to do worse simply because they started out sicker. An innovative aspect of this study was the approach to adjusting for this possibility. Wieland used a prognostic index developed by Palliative Care physician Elise Carey to control for baseline risk.

The main intiguing finding of this study: Elders enrolled in PACE had better survival. This advantage was most pronounced in medium and high risk patients. In elders with medium risk Carey scores, median survival was 2.8 years in those enrolled in nursing homes, 3.4 years in the waiver program, and 4.7 years in PACE. In elders with the highest risk Carey scores, survival was 1.4 years in nursing homes, 2.0 years in the waiver program, and 3.0 years in PACE.

So, at a minimum, this study suggests that providing supportive social and medical services makes it possible for elders who would otherwise need nursing homes to stay at home. Further, there is an intriguing possibility that innovative programs like PACE might improve survival. Unique aspects of PACE include the complete integration of medical and social care, and active management by a highly multidisciplinary team. The novel use of adult day health as the centerpiece of these programs, and the integration of the multidisciplinary teams into the day health centers means that the typical PACE enrollee is followed very intensively.

Of course, no single study of this sort can be definitive. It is possible that other unmeasured medical and social characteristics of elders in these programs explain survival differences rather than differences in the care provided by the programs. It will take additional studies and evidence from multiple sources before we can clearly know if different long term care approaches have an impact on health outcomes. The Wieland study is a crucial start in assembling this evidence base.

by: [ken covinsky]

Palliative Care Grand Rounds – 3 Degrees of Separation

It’s that time again. Geripal is hosting Palliative Care Grand Rounds. This time we are going to try a little game to show how fun it is to blog about the work we do (come on - where else would one read about a Great Dane and a hat-shaped toilet paper cover all in the same article – not in the NEJM!) . So here is the game - we list three things described in the post and you try to guess what the post is about!

Roving bands of doctors, a Great Dane named Murphy, and hat-shaped toilet paper covers
Dr. Bruce Leff and the Johns Hopkins Elder House Call Program are spotlighted in this post from the New York Times blog, the New Old Age. The value of house calls program and their impact on the lives of patients are nicely presented, but it’s the comment section that makes this post stand out for us.

Football, hospitalists, and missed expectations
Chris Langston, from the John A. Hartford Foundation, posts about a recent NY Times article on hospitalists and transitions in care (“New Breed of Specialist Steps in for Family Doctor”). Turns out there was a very negative response to hospitalists seen in the comment section of the NY Times article. Chris’ take was that they were “really reacting to is their shock and surprise that when they or a loved one was in the hospital, a different team member than expected turned up to provide care”. It's amazing what we can learn from comment sections!

$1 Billion dollars, a home health provider, and a hospice agency
What happens when a for-profit home health provider buys a for-profit hospice for $1 billion dollars? Tim Cousounis has some thoughts about what it may mean at his blog Palliative Care Success.

Prestige, your ears, and your toes
Jan Henderson, from the Health Culture blog, writes about a study by a Norwegian doctor that investigated the prestige factor for both diseases and medical specialties. See Jans post for a full summery, but briefly, diseases and specialties associated with invasive procedures in vital organs located in the upper parts of the body are generally given high prestige scores, especially if the typical patient is not old. Low prestige scores are given to diseases and specialties associated with elderly patients, and with chronic conditions located in the lower parts of the body or having no specific bodily location.

Palliative, Supportive, and other friendly sounding names
What do you prefer – palliative care, supportive care, superfantastic interprofessional care (SIC for short)? Voice your opinion at Frances Shani Parker blog post discussing a recent survey aimed at determining the impact of the name palliative care compared with the name supportive care on patient referrals.

Interstate moves, vegetative states , and the state of the word "Never"
Drew's back and, from what I can tell from his in-depth analysis of two recent articles on PVS, better than ever. Check out his Pallimed post about the prognosis in vegetative states and how we select our words when discussing this with family members.

Myths, Mistreatment, and Missed opportunities
Solomon Liao, MD FAAHPM, wrote on the AAHPMBlog about the top 5 myths of elder mistreatment. Yes, even with the best hospice and palliative care, patients can still be mistreated or abused. Join the comment thread about the value of an underfunded and understaffed APS service.

Disney Channel, Cremation, and being “eternally green”
Chick Lit’s Jennifer Adaeze Anyaegbunam writes about green burials in this post. Want to know how the Disney Channel fits in? Tough, I can’t ruin the surprise.

Abraham Lincoln, George Washington, Julius Caesar
Per Amber Wollesen from Pallimed Arts, the common thread between these three figures is that they all had death masks made of themselves. Want to learn more? Check out her post here

Atul Gawande, Commencement Speaches, and Atul Gawande
It’s getting hard to find a blog post that doesn’t mention Atul Gawande nowadays. Here are some of the best that mentioned his name in association with commencement speaches. Probably the funniest is the Buckeye Surgeons post about Atul Gawande commencement address at Stanford medical school. Any description of this post will not do it justice so I’ll just show you the link here. Musings of a Dinosaur also writes to the “ two or three graduating Stanford seniors (statistically) going into primary care” and how they shouldn’t worry about the death of the generalist physician. Lastly, even though it just mentioned Atul in passing, FutureDocs’ Vineet Arora, MD, gives some tips for any attendings out there who are “shepherding the new interns into the hospital this July”.

Gupta, Abstracts, and Miracle Cures for Cancer
Gary Schwitzer's HealthNewsReview Blog pages our dear Dr. Gupta in this scathing post. In a recent episode Dr. Gupta responds to the viewers question "Does anyone know a "miracle" treatment for ovarian cancer?”. Gupta's answer included the results of an abstract presented at a national meeting about how adding the drug Avastin to standard chemotherapy "can slow the spread of this cancer pretty dramatically” and that “cancer experts believe these results could change how doctors treat women with advanced ovarian cancer." To bad that neither of these statements are really true. Read more here.

Rants, palliative care, and the year 1978
db's Medical Rants does a nice job summarizing the importance of improving palliative care education. My favorite quote "Palliative care programs can help residents understand. But perhaps we need more patient education programs. We need patients and families demanding palliative care also." Well, good news along this front too, the Hospice and Caregiving Blog anounced that the Hospice Foundation of America (HFA) just created the Hospice Information Center for families, friends and professionals.

My apologies to those bloggers we missed, but that's why we have a comment section!!!! Please leave a comment below mentioning your site and your favorite post for the month. Also, a very special thanks to Christian Sinclair and Pallimed for including us and organizing Palliative Care Grand Rounds!

Check out next months Palliative Care Grand Rounds at Confessions of a Young (Looking) Social Worker.

by: Eric Widera

The Right to Fail?

Recently, Zaldy Tan MD wrote a thoughtful article in JAMA (The “Right” to Fall, JAMA. 2010;303(23):2333-2334) regarding the autonomy of elders and the tension we often face in the geripal world between doing right for the patient and preserving the rights of the patient. I’m sure many of us have experienced this and have repeatedly discussed in team and with families whether there is “anything we can do” to help the patient who is surely a slow-motion train wreck waiting to happen. Unlike Wall Street banks, we allow patients to decide to “fail” on a regular basis: she doesn’t want more help, doesn’t want to consider moving to a higher level of care, doesn’t want to have that test/procedure/ medication/(fill in the blank), and HAS capacity, however limited, to make her own decisions even when those decisions may result in injuries or hospitalizations.

Dr. Tan writes of the impact the patient’s decisions have on her aging daughter and on the treatment teams and concludes that “I would explain again that no matter how misguided, older patients are entitled to make their own decisions. I would espouse the ethical principle of autonomy….” Most of us were likely trained within the boundaries of 20th and 21st century western biomedical cultural constructs and would presumably agree with these statements. But what if Carla, the patient’s daughter in the article, were also your patient? What if autonomy were not solely viewed as an individual’s right but as a concept that needed to be considered within the context of the person’s community, relationships, or interdependencies? The concept of “relational autonomy” is not new and I am not advocating that we move towards allowing the societal “greater good” to dictate medical decision making for individuals; history is littered with terrible examples of what can happen when we allow that to happen. But, while we can and do use individual autonomy as the principle that enables us to ethically step back and however regretfully watch the train go off the cliff, the emphasis on individual autonomy may also give us, in some sense, the right to fail families and caregivers, and perhaps even the patient herself.

by: Helen Chen, MD

The breadth of life-sustaining treatment

In a recent story in the New York Times, Katy Butler described her parents' experiences with illness, the health care system, and the decline of her mother's well-being in-step with her father's physical and cognitive decline.

Butler's beautiful account of her parents' lives before the onset of illness and subsequent to her father's stroke, pacemaker placement, and progression to advanced dementia and frailty are moving in the human story alone.

But what struck me in reading the story, and some of the hundreds of comments which were posted from readers, was that this story is not just about pacemakers, health care costs, and the age old conflict between the risks and benefits of medical interventions and appropriateness in individuals of a given age or level of frailty. A retired cardiologist commented that the pacemaker was not, as with a defibrillator, keeping Butler's father alive (in what Butler described as his final years in "purgatory") but was regulating a bradycardia which might otherwise have given him significant symptoms (although prior to the pacemaker placement, Butler noted he was asymptomatic). What I learned from this remarkable story was that a focus on pacemakers as something which could be perceived as a 'life-sustaining' intervention is too narrow a view of Butler's story. I have begun to question our medical and cultural perspectives of distinguishing between medical interventions which are procedural (such as device placement, CPR, surgery) and those which are pharmacologic.

If one considers 'life-sustaining' treatment, one often encounters the standard list: CPR, mechanical ventilation, pressors, defibrillators, dialysis, etc. When we discuss 'end of life' care and 'advanced directives' we naturally primarily discuss significant interventions such as these. But medical illness, and an individual's experience of illness or decline, will often bring the individual to encounter the less procedural (eg pharmacologic) treatment modalities earlier. We generally don't question Jehovah's Witnesses' choice to avoid blood products. And we generally don't question a preference for 'no-code' in a patient with terminal cancer. The classic tension in choosing pharmacologic treatment or not in a life-death situation is with chemotherapeutics in patients with cancer. But reading Butler's article, I began to see her father's story as one not just about the appropriateness of a pacemaker and the ethics of when and how to turn one off. I began to see the story as the tug and pull between medical science/technology and 'natural death' (however a given individual defines it).

As physicians, as practitioners of medicine, we have been trained to try our best to diagnose and treat illness, discomfort, debility. But where do we draw the line (the distinction) between what we think we should do medically for a patient, what medicine can scientifically do for a patient, and what a patient wants for his/her own life and death. Someone choosing to die without life support in the comfort of their home and after stopping extraneous medications which do not promote comfort (the usual hospice picture) can be seen as choosing a 'natural death.' But do we draw that distinction only at the, quote "end of life"? Do we discuss 'natural death' only with those who are 'approaching their final chapters?' What does natural death mean? All illness may not lead to death. But certainly many diseases and conditions, if untreated (or suboptimally treated) will lead to further morbidity and possibly death. Perhaps our patients who avoid medical care and medications for their hypertension and diabetes are telling us they want to live their life 'naturally' (with all the risk and future burdens of these conditions). We are quick to judge these patients as 'non-compliant', or perhaps more empathically 'needing more education, guidance, patient-centered direction.' But I think about my patient with angina and coronary artery disease who is knowledgeable and cognitively competent who chooses to live his life with yoga, herbals and holistic modalities. No aspirin, no beta blocker, no statin. Perhaps he, just like Butler's parents, is choosing his 'natural' course to life and death. And, thus, medications and procedures suddenly become one. How an individual defines life-sustaining could start with carvedilol and atorvastatin.

I recognize at this point someone will undoubtedly point out to me that the risks and side effects of procedural interventions far outweigh those of most pharmacologic interventions, and that is why we tend to distinguish between a pacemaker and aspirin. As with all things geriatrics and palliative, there is no right or wrong answer. But the more I care for patients at different stages of their lives (whether a frail 66yo, a robust 85yo, a dying 73yo), the more I realize that I'm generally not the one who defines where living and dying blend and where 'natural death' begins (if 'natural death' is what my patient chooses).

by: Helen Kao

Are you a good worker? Do you work hard? Do you care so much about your job that you show up to work even when sick?

Well if your answer is yes, and you work in health care, you may be a public health hazard.

An important article in the Journal Of General Internal Medicine illustrates the potentially serious public health hazards of presenteeism, or showing up to work even when sickness compromises your ability to do your job. The lead author was Dr. Eric Widera, from the UCSF Division of Geriatrics (and GeriPal!). Co-authors included Drs. Anna Chang and Helen Chen.

Dr. Widera presents a compelling case of a nursing home gastroenteritis outbreak that lasted 24 days and was prolonged by staff members coming in to work sick. Gastroenteritis outbreaks, in which numerous patients develop an illness characterized by nauseau, vomiting, and diarrhea, are very common in nursing homes, or any setting in which people live closely together (such as cruise ships or college dorms). In healthy people, the symptoms can be highly distressing, but are usually self-limited. But in very frail nursing home residents, gastroenteritis can be dangerous.

Over the first 3 days of the outbreak, 10 nursing home residents and 5 staff members became sick with what proved to be norovirus---a form of gastroenteritis known to be supercontagious. Usual infection control procedures were instituted, and one would have expected the outbreak to run its course. However, by the end of the first week, despite recommendations to the contrary, it became clear that ill staff were coming to work. Often symptoms were not reported until employees had arrived for, and somtimes completed, their shifts. When it became clear that voluntary measures to prevent presenteeism had failed, the local health department stepped in to enforce "back to work" rules. By the end of the outbreak 35 residents and 24 staff had fallen ill with gastroenteritis.

Widera notes that nursing homes may be particularly susceptible to staff-resident-staff transmission of infectious diseases because the frailty of nursing home residents requires close physical contact between residents and staff. Unfortunately, in many nursing homes in the US, staff are not adequately paid, and may lack benefits including adequate sick leave. Financial difficulties may be make it hard to take time off from work.

However, physicians may be the worst presenteeism abusers. Widera cites a survey of British physicans in which 87% of general practitioners and 58% of hospital consultants said they "definitely would not" stay home if they had a severe cold.

When I was a resident, the culture was such that you came to work unless you physically could not get out of bed. Virtually all my fellow houseofficers and I had stories of how we on some occasion did just that. I hope that culture has changed.

Widera and colleagues have made an important contibution by telling the story of this outbreak. I strongly suspect similar episodes occur daily throughout the US, but we won't be able to prevent these occurences if we don't share these stories and learn from them.

by: [ken covinsky]

End Stage Dementia: What to do with treatment?

Hospice programs provide much needed care and support for patients, families and caregivers for people with end-stage dementias. Thanks to the evolution of medical therapeutics, some of theses patients have been managed with cholinesterase inhibitors or NMDA receptor antagonists prior to their ultimate decline and the advent of hospice care. Physicians, families and hospice programs are then faced with a dilemma: should these medications continue?

A recent Brief Report in the Journal of Palliative Medicine (Shega, et al J Palliat Med 2009) provides perspective on this issue by surveying 152 hospice medical directors on practice patterns and clinical experiences. Seventy three percent and 33% of respondents reported more than 20% of their patients are on cholinesterase inhibitors or NMDA antagonists, respectively. Eighty percent of responding physicians would recommend discontinuation of the agents as part of the hospice plan of care. At the same time, 72% report that families had difficulty with the recommendation to stop therapy, with only around 50% actually proceeding to discontinue the treatment. Among responding physicians, 20-30% believed that these medications provided sufficient cognitive or functional benefit for either patient or caregivers, such that they would be less likely to recommend discontinuation. Based on these findings, the authors conclude with a recommendation for prospective studies to evaluate the clinical impact of discontinuation for patients and caregivers.

As a hospice medical director, I wholeheartedly support this call for research on this issue. I have based my approach to this problem on my experience and periodic reviews of the literature. From an experience perspective, it is essential to remember that to qualify for terminal illness Medicare guidelines, a dementia patient must be incontinent, nonambulatory, and no longer able to communicate meaningfully (FAST Stage 7). Under these circumstances, goals of care are typically focus solely on comfort, with potential for meaningful cognitive, behavioral, or functional goals having sadly, yet inevitably slipped away. Seldom does one of these medications contribute to comfort and quality of life. Issues of “pill-burden,” side-effects, and cost are substantial. Rare have been the cases of actual difficulty upon medication discontinuation, although family distress with the process is indeed a very real concern. This understandable distress is addressed as a grief and loss issue by my hospice team. Our local geriatric psychiatrist shares a similar view.
My reading of the relevant literature is that it is sorely lacking in persuasive evidence of benefit of these medications in the end-stage situation. Two widely quoted articles evaluated the effects of cholinesterase inhibitors in patients with “severe Alzheimer’s disease.” (Burns, et al Lancet Neurology 2009; and Black et al Neurology 2007). Notably, the Burns study excluded non-ambulatory patients and the Black study included 176 patients, only 11% of whom were FAST Stage 7. Both studies concluded that the drugs had benefits in certain parameters. It is my professional opinion that, because of the patient populations evaluated, these studies are not relevant to the truly end-stage, hospice appropriate patient.

The Clinical Guidelines published in Annals of Internal Medicine (Raina, etal Ann Intern Med 2008.) say nothing about end-stage patients. Their conclusion about treatment in general is half-hearted at best: “treatment… can result in statistically significant but clinically marginal improvement….” The resulting Practice Guideline (Qaseem, et al Ann Int Med 2003.) recommends individualizing assessment and treatment decisions and calling urgently for further research. The related editorial emphasizes the issues of clearly defining therapeutic goals and “when, if ever, to discontinue….” The guideline panel was unable to address the issue for lack of evidence, wisely pointing out that, “if slowing progression is no longer a goal, there is no reason to continue.”

I offer this blog-post in the spirit of inviting discussion, sharing of experience, and to add my voice to the call for research on behalf of so many patients and families. How do you approach this dilemma? What would a study of this problem look like? Until more clear evidence and consensus develops, I plan to continue to focus on goals of care, clearly beneficial interventions, and reducing burdens of treatment.

Brad Miller MD
Board Certified, Hospice and Palliative Medicine
Grass Valley, CA

There is an article in today's New York Times about delirium, a VERY common but poorly understood condition among hospitalized elders. Delirium is an acute confusional state usually caused by an acute illness (or unfortunately the treatments we give acutely ill patients) or surgery. While patients with delirium clearly have serious brain dysfunction, the inciting causes are almost always outside of the brain.

Numerous studies suggest that delirium effects at least 1/4 of hospitalized persons over the age of 70. But it is properly diagnosed less than half the time. It is very serious. Hospitalized elders who become delirious are at much higher risk for bad outcomes including disabilty and death, as well as nursing home placement.

Delirium is commonly confused with dementia. Dementia is a chronic decline in cognitive function. Delirium is an acute change in cognitive function. Dementia and delirium commonly coexist---and patients with dementia are more likely to also get delirium. But, one generally should not make a new diagnosis of dementia during an episode of delirium. As illustrated in the NY times article, elders with normal cognitive function can become delirious.

Features in a hospitalized patient that may suggest delirium include:

A clear change in the patient's baseline mental state. (The family may note "something is not right." "Dad seems different" It is good to take such comments seriously and get more details)
The person has trouble focusing and paying attention. They are easily distracted
The mental status fluctuates over the course of the day
The person's thinking seems disorganized or incoherent. Answers to questions may seem tangential.
The patient sees or hears things that are not there
The patient is inappropriately somnolent or hypervigilant

The NY Times article puts most of its focus on stories in which the patient is very agitated and combative. It is very important to remember that this is probably far less than half of delirium. Most of delirium is of what is known as the hypoactive variety, which is probably why it so often goes unrecognized. The patient just stays quietly in bed all day, doesn't talk much, and doesn't touch their food. These patients may not cause as much angst for the hospital staff, but they just languish while in the hospital. This more common form of delirium is every bit as bad and dangerous as the agitated delirium described so vividly in the article.

One important point that is often not unrecognized: Once delirium occurs, it often gets better VERY slowly. Many, if not most patients will still have some delirium when they leave the hospital. It is very important doctors, nurses, and social workers recognize this. Who will help care for the patient? Will the family need help? You may have a wonderful discharge protocol in which you go over all the medicines and discharge instructions with the patient. Don't be surprised if they understand none of it.

Sharon Inouye's work shows that at least some cases of delirium can be prevented. The interventions are very common sense. Things like recognizing and compensating for sensory impairments, increasing mobilty, minimizing the use of restraining devices like IV and catheters, and minimizing sleep disruption. It is time for these interventions to be more widely implemented.

by: [ken covinsky]

Preventing Disability vs. Improving Quality of Life for Elders Living with Disability: Both are Important

I heard a prominent speaker talk about studies at the National Institute of Aging. The speaker described several new large and well funded trials aimed at preventing illnesses associated with aging, such as dementia and disability. These studies are terrific, and worthy of funding. I was disappointed, however, that little was said about funding for studies of older adults already living with dementia and disability. Research in prevention will not help these patients. I asked: where is the funding that focuses on improving the quality of life for these patients? The speaker replied that the National Institute of Nursing Research is the funding center for end-of-life research.

Aging research has always had a strong focus on quality of life concerns, but I worry that the emphasis has shifted too far toward the "successful aging" model. This model sets up an unreasonable expectation that if you do all of the right things (eat right, avoid smoking, exercise your body and mind) you will be able to play tennis and Scrabble until you die. What about those patients, like the many I care for (and I suspect you care for as well), who live with cognitive impairment, disability and multi-morbidity for years? Have they "failed aging"? Cancer centers made the same mistake for years, with slogans like "focused on the cure" - what about those patients who can't be cured?

Here is some empirical data that sets the table for this issue. Tom Gill was the lead author of a terrific study published in the New England Journal of Medicine recently. Dr. Gill has been following a cohort of older adults since 1998, and 383 of 754 died and were eligible for the analytic sample for this study. Ability to complete basic activities of daily living (such as toileting, eating, dressing, and transferring from a chair) was assessed monthly. Disability was defined as the need for assistance with these activities of daily living, and was rated on a scale of one to four. Dr. Gill used some fancy statistical methods to plot disability trajectories in the last year of life. Here are two major points from the study:

Nearly half of elders who died had at least one disability one year prior to death
There was surprising heterogeneity in the disability trajectories. Patients with organ failure or frailty were about as likely to have no disability at least until the last 2 months of life as they were to have persistently severe disability for the entire year before death
Only about 40% of subjects with cancer had what we might consider a prototypical cancer trajectory, as described most prominently by Joanne Lynn and June Lunney as sudden and catastrophic disability in the last few months of life.

Dr. Gill makes a nice point about these findings in the discussion:

"This heterogeneity in disability trajectories suggests that personal care needs at the end of life cannot be easily predicted for most older persons and raises concerns about policies that establish benefits for end-of-life care primarily on the basis of disease-specific criteria."

Here's the thing I'd like to come back to: nearly half of these elders were living with disability for the last year of their life. I'm sure a substantial proportion were disabled for years, and a minority may have been disabled for decades. Shouldn't we focus funding on caring for those patients? Is it ethical to focus funding on "compressing disability" until just before death, leaving "end-of-life" funding for one of the smallest and most poorly funded NIH institutes?

by: Alex Smith

Best of the Web - Palliative Care Grand Rounds Coming Soon

We need your help. GeriPal will be hosting the July 2010 installment of Palliative Care Grand Rounds. For those of you who don’t know, Palliative Care Grand Rounds is a monthly blog series highlighting some of the best and most interesting blog posts related to palliative care, hospice (and in our case - geriatrics too!). If you find anything out there in the blogosphere that you think is worth passing on, please add it to the comment section below this post with the name of the website and the link (add a description if you’d like, but that’s optional). Last day to submit will be the 4th of July.

If you want to see a great example of palliative care grand rounds, check out this month’s edition at Bedside Manner.

by: Eric Widera

John Wooden's Feelings on Death

Much has been said about John Wooden's inspiring approach to life, but what can we learn about his attitude towards death? His family and former player Keith Erickson reflect that he hated being in the hospital, and wasn't happy for the last two years of his life. At the same time, the inner peace that Wooden expresses in this video evokes a powerful image of a "good death." How can his story be used to bring attention to the role and importance of palliative care?

Watch this incredible one minute video on John Wooden's feelings about death (interview with Rick Reilly). It moved me so much that I watched it several times and transcribed it below.

REILLY: Are you afraid to die?
WOODEN: No. I’m not afraid to die.
REILLY: How come?
WOODEN: Why should I be afraid? That is the most wonderful thing that’ll ever happen. It really is. Absolutely I’m not afraid to die.

"Once I was afraid of dying, Not Anymore" by Swen Nater (former Bruin player), written for John Wooden

Once I was afraid of dying. Terrified at ever lying.
Petrified of leaving family, home and friends.
Thoughts of Absence from my Dear Ones,
Brought a melancholy tear once
And a dreadful dreadful fear of when life ends

But those days are long behind me,
Fear really does not bind me.
And departure does not hold a single care

Peace has comfort as I ponder
A reunion in Thy yonder,
With my dearest one who is waiting for me there

Posted by Lindsey Yourman

What is Our Responsibility?

Is advocating for equal access to opioid medication around the world part of our professional responsibility? What about reducing racial disparities in access to high quality long term care? Are these obligations or worthy aspirations?

Several of us in the UCSF Division of Geriatrics have been talking recently about where clinician obligations ends and aspiration begins. This discussion raises important questions about the limits of professionalism.

The image is a conceptual model of this issue from a terrific paper by Gruen, Pearson, and Brennan.

Caring directly for the patient in front of you is clearly a professional obligation. In hospice care, this obligation theoretically extends to caring for the patient's family or loved ones. I have some concerns about balancing obligations to patients and their families, but let's leave that for another post. I think clinicians can agree that direct patient care is the core of our professional responsibility. Now let's move away from the center of the conceptual model.

The next layer in the model, providing access to care, is certainly a central issue in health care, and ought to be part of our professional obligation. This includes not just the usual health care coverage for all, but also access to interpreters for non-English speaking patients, accommodations for patients with disabilities, and mechanisms for serving rural and home-bound patients.

The layer out from this includes direct social determinants of health, like smoking. Counseling patients about smoking is a direct patient care issue, but advocating for local, state, and national laws to reduce smoking is a social determinant of health.

The outer two layers represent broader social determinants of health, such as income inequalities and racial/ethnic disparities, and global health issues such as the unequal distribution of resources and knowledge.

The further out from the center of the conceptual figure, the less direct the connection between that factor and health. While global health equity issues certainly contribute to international health disparities, the linkage is not as clear as, say, smoking and lung cancer. The clinician's responsibility to address these issues may be no different than any other citizen's responsibility.

Where do you draw the line between the obligations of health professionals in the public arena, and values that are worthy aspirations? Gruen drew the line between direct and broad social influences. I believe most health providers would draw the line between obligations and aspirations at the innermost circle - direct patient care.

Where should the line be?

by Alex Smith