Thursday, February 4, 2010

The Cultural Distance Between Geriatrics and Palliative Medicine

I just read Chris Feudtner's brief piece, "The Breadth of Hopes," in the New England Journal.  Among other things, the article helps me articulate a difference between care at the end of life (last years, months, days) for many older people and care at the end of life for younger people. The distinguishing characteristic here is whether or not an individual has seen death coming, even distantly, and processed that, even a bit. Not all older people have done so, but many have – I think of the patient in David Reuben's recent JAMA paper who said, “When you’re 83, it’s not going to be 20 years.” And many families have come to a similar point when an older family member develops a life-threatening illness. In contrast, few younger people come to such a point before developing a serious illness. As one of my colleagues says, in geriatrics, our patients are nearer the end than the beginning, and they generally know that. This is not the case for younger people, and in our society, probably never the case for a parent with a previously healthy child.

I wonder if this difference might account for some of the cultural distance between geriatrics and palliative medicine, when such distance exists. Geriatricians may think, I do care at the end of life for many patients, and I do it well. Palliative medicine specialists may think, even geriatricians who provide great care at the end of life just don’t get an important part of palliative medicine, caring for people who won’t live a “natural lifespan,” who have had their hope for a long life dashed, and yet you may still hope for a miracle.

Does this resonate?
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Wednesday, February 3, 2010

Persistent Vegetative State: An apt description for the media coverage of PVS

The New England Journal of Medicine released a study today revealing some awareness in a minority of patients diagnosed with Persistent Vegetative State (PVS). Researchers used functional MRI tests on 54 patients with PVS or minimally conscious state (MCI). The MCI patient data is interesting but the meat of the study is in the 23 patients diagnosed as being in a persistent vegetative state, meaning that clinically all exams showed no signs of awareness. Four of these 23 patients showed brain activity in areas similar as healthy control subjects when given specific commands. One of these four patients was also able to respond to factual statements correctly by using a technique similar to answering yes-no questions.

My favorite part of the article is in the discussion section:
In the future, this approach could be used to address important clinical questions. For example, patients could be asked if they are feeling any pain, and this information could be useful in determining whether analgesic agents should be administered.
This would be the dawn of a new era where we have new tools to evaluate the symptoms of those who cannot verbally or physically communicate with us at the bedside. The caveat is the most patients with PVS in this study showed no signs of awareness and could not communicate in any significant manner even when placed in the fMRI machine.

Take a guess though what the media headlines focus on:
  • Scientists read the minds of the living dead (New Zealand Herald)
  • Patients in 'vegetative' state can think and communicate (The Telegraph)
  • Brain scan shows awareness in vegetative patients (BBC News)
  • Brains of vegetative patients show life (LA Times)
  • Study Finds Cognition in Vegetative Patients (Wall Street Journal)
These headlines are just wrong. They give the impression that all patients with PVS are aware and can communicate. In truth, this study showed that a minority of patients with PVS showed some signs of awareness, and those happened to only be in those who suffered from a traumatic brain injury (not from other causes such as anoxic brain injury). To be fair, there were some more appropriate headlines including Newsday with “Some vegetative brains show signs of awareness” and BusinessWeeks “Brain Scans Suggest Some Vegetative Patients May Be Aware”, but overall the media continues to show limited signs of self-awareness when reporting on journal articles.

Reference:
Monti, M., Vanhaudenhuyse, A., Coleman, M., Boly, M., Pickard, J., Tshibanda, L., Owen, A., & Laureys, S. (2010). Willful Modulation of Brain Activity in Disorders of Consciousness New England Journal of Medicine DOI: 10.1056/NEJMoa0905370
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Tuesday, February 2, 2010

Social Media in Palliative Care Communities: A New Workshop at the AAHPM/HPNA Annual Assembly

A new workshop on the usage of online social media has been added to the AAHPM/HPNA Annual Assembly this March. The session, titled "Social Media in Palliative Care Communities: Developing and Maintaining your Online Presence", will be led by a panel of bloggers from GeriPal and Pallimed and will take place on  Friday March 5th, 7-8:15am (I know, it's early, but it's nothing that a double expresso can't fix). 

The goal of the workshop is to bring people together interested in using social media to advance the field of Hospice and Palliative Care.  The great thing about setting up a workshop like this is that we get to take advantage of the resources that these online networks give us in developing the actual content. One of these tools is a brief survey that Christian Sinclair created to get an understanding of what potential attendees may want from such a session.   So take 3 minutes of your time and either fill out the survey or post comments here or at Pallimed on topics that may motivate you to wake up at 7am on Friday.

-----------------------------------
Here is the abstract for the session:
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Social Media in Palliative Care Communities: Developing and Maintaining your Online Presence.

Time: Friday March 5th, 7-8:15am

Panel:
Amy Clarkson, MD, Kansas City Hospice & Palliative Care, Kansas City, MO (Pallimed)
Christian Sinclair, MD, FAAHPM, Kansas City Hospice & Palliative Care, Kansas City, MO (Pallimed)
Alexander Smith, MD, UC San Francisco (GeriPal)
Eric Widera, MD, UC San Francisco (GeriPal)
Amber Wollesen, MD, Saint Luke's Hospital, Kansas City, MO (Pallimed)

Abstract:
In this session, the panel will present the various social media platforms where palliative care information is being created, commented on, and shared. Understanding the importance of social media to hospice and palliative care as a field is helpful in spreading information consistent with our professional values, dispelling myths, and educating professionals in addition to patients and families. We will present successful examples of palliative care in social media from the perspective on the individual as well as the larger community. Despite the opportunities, there are concerns about privacy, time commitment, and legal risks which will also be addressed. The session will not go into detail on the 'how-to' aspects of specific social media platforms. The initial presentation will be approximately 30-40 minutes with plenty of time for discussion with the audience and panel.
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Friday, January 29, 2010

What a nursing assistant will tell us...if we ask

A friend recently forwarded me an update to a story first reported in the Washington Post in May 2009 about a home care nursing assistant, Marilyn Daniel. (Here’s the update). Using quotes and photographs, the author describes a typical day of visits—from transportation challenges to detailed, moving stories of a few of her patients. It caused me to pause and reflect upon the caregivers closest to our geriatric patients. Nursing assistants provide the greatest amount of direct care to our patients whether in hospitals, nursing homes, or homes. For me, this article aptly notes the challenges of the job, the importance of continuity of care, and the difficulty for home health aides when given a next “case” right after a long standing relationship with a patient ends (or perhaps when hospice comes in and negotiations can’t be reached for keeping the same home health aide). The audience here at GeriPal is one that knows these issues well, but when a photographer/writer captures it so movingly, I can’t help but call attention to it.

It is projected that there will be a 50% growth in home health aide positions in the next ten years because of the expansion of home care for our geriatric population (US Bureau of Labor Statistics). How will we work with home health aides to increase retention? How can we argue for better compensation for such a demanding (physically and emotionally) position? And for those of us involved in geriatric palliative care, how can we ensure that palliative care education is offered and encouraged for home health aides?

In the larger picture, offering continuing education and acknowledging specialized training is a start. I know that programs such as ELNEC-Geriatric include specific content and attention to nursing assistants (self disclosure - I’m part of the team offering this course in Philadelphia in March-link above is for this, but see * below for more details). And in recognition of additional education and experience in palliative care, HPNA (through NBCHPN) offers certification for nursing assistants. These are a start—as was the public attention given to the role in the Washington Post articles. In my own practice, the same as with most of you I assume, I often elicit opinions and thoughts from the home health aides caring for an individual. But in the smaller, every day picture is this enough? How we can better include nursing assistants in palliative care teams? I don’t have the answer, but I do think that as we continue to consider how geriatric palliative care is delivered, we all need to advocate for nursing assistants as valued members of the interdisciplinary team.

* ELNEC-Geriatric Train the Trainer Course, March 9-10, Philadelphia, PA
Nursing CEUs (12) offered and we’re working on the Social Work CEUs
Sponsored by University of Pennsylvania School of Nursing, Penn Wissahickon Hospice and NewCourtland.
http://www.pennmedicine.org/homecare/conference/end-of-life-nursing-education/
.
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Thursday, January 28, 2010

Mammograms in Women with Dementia: What's the Problem?


A study in the American Journal of Public Health examining mammogram use in older persons found that 18% of women with severe cognitive impairment had received a screening mammogram in the prior 2 years. These women had an average life expectancy of 3.3 years. Since one needs to live at least 5 years to benefit from screening mammography, most of these women had no chance of benefiting from mammography, but were subjected to all the potential harms.

The authors of this study, which included our UCSF colleagues Kala Mehta and Louise Walter, describe this as a good news-bad news finding. The good news was that women with severe cognitive impairment were much less likely to get mammograms. So doctors are to some extent individualizing screening decisions. The bad news is that this still represents a very large number of potentially harmful mammograms.

On the Newsweek website, Sharon Begley provides an excellent commentary on this study. This commentary was a pleasure to read. It explained complex issues in clear terms. It was a refreshing change compared to the simplistic discussion from much of the press during the recent mammogram controversy. It is instructive to read some of the comments on Ms. Begley's piece. It appears that there is often an instinctual reaction to any recommendation not to do a cancer screening test to assume the motivation is rationing, or a desire to save money. However, the reason not to do mammograms in women with dementia is that they are likely to do harm. The fact that this harm also costs money is just an added insult.

In order to help our patients avoid care that is more likely to hurt them than help them, it is important all of us be able to explain to our colleagues why mammograms are not a good idea in women with dementia. Here is a brief outline of that explanation:
  • Mammography frequently finds abnormalities that are not cancer and need further evaluation. The fear caused by these findings, and the stress from the evaluation can be debilitating for healthy women. For women with dementia, the anxiety and stress can be debilitating. And with dementia, this stress is also felt by overworked caregivers.
  • However, contrary to common perceptions, the most serious harm from mammography in women with dementia is not false positives, but actually finding a clinically insignificant cancer. The concept of clinically insignificant cancer is not understood by the public. A clinically insignificant cancer is a tumor that if undiagnosed would never cause symptoms in the patient's lifetime. The type of tumors for which mammograms are beneficial will generally be clinically insignificant in women with dementia. Without mammography they will go undetected and not cause problems. But if found, these women will often be given surgery and other invasive therapy. To subject someone with dementia to invasive therapy that has little chance of benefiting them is very unfortunate. Dr. Walter has previously shown that in some cases, this treatment leads to devastating complications, including one case report of a non healing wound infection, and another case of a post-operative stroke.
Perhaps the most fundamental problems with ordering screening mammograms in women with dementia is that it suggests check box medicine is being provided, and therefore the real needs of the patient and her caregiver are not being attended to.

Our health system fails frail elders with dementia. There is so much more that needs to be done for them. Contrary to those who raise the Rationing charge when it is suggested that women with dementia not get mammograms, this is actually about doing more for these patients, not less. We can start by not doing tests that are more likely to hurt our patients than help, and focusing on what these patients and their caregivers really need.
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Wednesday, January 27, 2010

Morphine Sulfate oral solution is now FDA approved


Morphine sulfate oral solution is now FDA approved thanks to a concerted effort by many in the hospice and palliative care community. To give a little history, in March the FDA issued warning letters to nine companies telling them to stop manufacturing (within 60 days) 14 unapproved 'narcotics' that are used to treat pain, including morphine oral solution. As you can imagine this created quite a little stir in the palliative care community and in our blogosphere.

AAHPM, NHPCO, and the HPNA leaders came together, as well as online social networks that included blogs like Pallimed and networks like facebook. They expressed strong concern that taking liquid morphine off the market would result in hardship for terminally ill patients and their caregivers. Within 9 days of the announcement the FDA reversed their decision. At that point the FDA agreed to allow companies making and distributing the unapproved drugs to continue, until 180 days after any company receives approval to manufacture a new morphine replacement drug of the same dosage.

Yesterday a company finally did get approval. The FDA approved Roxane Laboratories' Morphine Sulfate oral solution for relief of moderate to severe, acute and chronic pain in opioid-tolerant patients. The approved concentrations are available in 100 milligrams per 5 mL or 20 milligrams per 1 mL. This news does give me some pause as this is now the only FDA approved morphine sulfate oral solution available at this concentration. I worry that in 180 days we may be facing manufacturing shortages of liquid morphine.  Hopefully another press release will come soon addressing these concerns.

Thanks to everyone for putting up a united front on this matter. It shows that a group of people can come together and make a difference!
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Tuesday, January 26, 2010

How do you treat your elderly clinic patients for chronic pain?


As noted on the Pallimed blog, a study published last week in Annals of Internal Medicine reports on adverse events associated with the prescription of opiates for chronic non-cancer pain.

In brief: they studied 9940 HMO patients (mean age 54) who received 3 or more opioid prescriptions within 90 days for chronic noncancer pain between 1997 and 2005. They used ICD codes with subsesquent chart review to identify "opioid-related overdoses", and found 51 events, of which 6 were fatal. After stratifying by categories of opiate exposure, they estimated that annual overdose rates were 0.2%, 0.7%, and 1.8% among patients receiving less than 20 mg, 50 to 99 mg, and more than 100 mg of opioids per day, respectively. (For more journal-club style details and analysis, check out the Pallimed post, which is good reading for those with a little more time and interest.)

I'll confess that when this article caught my eye, one of my first thoughts was "Argh! Now it will be even HARDER for me to persuade my elderly patients to try a little low-dose opiate for their severe arthritis, when all else has failed to control their pain."

Yes, it's true. I have some of my arthritic elders taking a little daily opiate for their pain: it allows them to walk around a little more and maintain their function, or so I tell myself.

But what do the rest of you think? In particular I'm curious to know what the primary care clinicians among you prefer to use for chronic noncancer pain in frail elders. And how easy do you find it to address the patient's (or often, the family's) worries about the risk of addiction or overdose? Will this latest study change your practice?
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Thursday, January 21, 2010

"Do not punctuate the end of your life with a senseless act of brutality!"


Words have power. Language has power.

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

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

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

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

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

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

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

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

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

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

Where do you see the line with these statements? What language do you use? Do you find yourself varying the language you use based on your recommendation for or against CPR? Does “unbiased” language exist?
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Monday, January 18, 2010

Post Traumatic Stress in Late Life


Over the past year, I have had several 80+ patients, combat veterans of WWII, who have had very significant symptoms of post-traumatic stress. These symptoms included nightmares and flashbacks related to their military service almost over 60 years ago. In several cases, the patient told me of these longstanding symptoms after I had cared for them for several years. In another case, I learned of these symptoms from a spouse.

I am not so sure why it did not occur me to ask about post-traumatic stress. Without thinking about it much, I guess I just presumed that if they had no previously documented history of post-traumatic stress symptoms it would not present itself decades later. As I have thought about this, I have concluded that my view here was incorrect, and that I needed to be more alert to the possibility of post-traumatic stress in my older Veteran patients.

A very important study in the December issue of the Journal of the American Geriatrics Society , led by Dr. Lance Rintamaki, demonstrates the importance of thinking about post traumatic stress in older persons. They surveyed 157 WWII Veterans who had been prisoners of war. Over 60 years after the war, many of these Veterans had significant symptoms of post-traumatic stress, including flashbacks, insomnia, and nightmares. A signficant number (17%) met the diagnostic criteria for post traumatic stress disorder. However, the most notable finding, is that these symptoms of post-traumatic stress often got worse after retirement. Over half of the Veterans reported that they think more about their POW experience since they retired, and over 40% stated that their recollections have become more distressing since they retired.

One can not know for sure if these results have implications for our older patients who have had not had military traumas in early life. By examining this issue in POWs, this study focused on a quite severe trauma. (Many of the subjects were tortured or witnessed executions). Still, I think it is likely that this study does have more generalizable relevance. Many of our older patients have had suffered severe physical or psychological trauma earlier life. I can't think of any reason why the mechanisms that cause late life resurgence of military stress would be any different for civilian stress.

What might these mechanisms be? In an outstanding, must read editorial, Dr. Jules Rosen suggests that less structured time in retirement, coupled with some of the stressful events of aging, such as loss of spouse or friends and declining physicial health, could precipitate the reemergence of post-traumatic stress decades after the actual event. I think it may also be the case that declining cognitive function could inhibit the ability of the older brain to suppress traumatic memories.

Dr. Rosen's editorial gives some excellent advice about the recognition and management of post-traumatic stress in late life. As with my patients, many will be reluctant to report symptoms of post-traumatic stress. You must ask. Many patients with flashbacks and nightmares may just request sleeping pills. It is important to be alert to the possibility of post-traumatic as one of the causes of sleep disturbance in the elderly. Also, some with post-traumatic stress may self-medicate, and the new development of substance and alcohol disorders in the elderly should alert one to the possibility of post-traumatic stress.

Dr. Rosen notes that in many cases, a sympathetic physician who assures their patient that late life symptoms of post-traumatic stress are common and not a sign of weakness may be the only therapy a patient needs. Patients whose symptoms impair daily functioning or lead to alcohol or substance disorders should generally be referred to a specialist.

Dr. Rintamaki and colleagues note that, "clinicians working with individuals who experienced significant trauma in the past must be mindful of these phenomena and their tendency to increase in later in life. Despite the signficance of prior trauma, clinicians tend to focus on physical health while overlooking psychosocial problems and their effect on patients' lives, particularly when working with elderly patients."

This paper will make me more alert to the possibility that severe early life trauma may be causing significant distress in my older patients.
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Saturday, January 16, 2010

Making Our Voices Heard: A Year in Review


It has been 6 months since the start of this little experiment called GeriPal. I must admit, initially I had a lot of questions about the viability of a blog about geriatrics and palliative care. Did it really make sense to combine the topics of geriatrics and palliative care in one blog? Would anyone notice the blog? Would anyone care?

The good news is that the answer to all these questions appears to be a resounding yes. The interest and attention that GeriPal has received has been extraordinary given that we have been around for such a short amount of time. A vibrant community has developed that has brought people together to talk about common challenges that we share in our day to day work. Much like what makes both geriatrics and palliative care special, this community is interdisciplinary to the core. Just take a look at the top 3 most commented posts for 2009 for a good example of who posts and who comments:
  1. A Rant on Terminology – by Patrice Villars (a nurse practitioner)
  2. Notes From the Field – by Anne Johnson (a social worker)
  3. GeriPal Taste Test Part I: Liquid Bowel Medications – by Ken Covinsky, Alex Smith, and Eric Widera (3 physicians)
What can you do to continue to foster this discussion within this interdisciplinary community? Probably the most important thing is to just join the discussion. This can be as simple as leaving a comment on a post that you find interesting. 

Thanks again for a great 2009.  I'll leave you all with the Top 10 Most Viewed Posts of the last year.
  1. Does Morphine Stimulate Cancer Growth?
  2. A Rant on Terminology
  3. End Stage Dementia: A Terminal Disease Needing Palliative Care
  4. GeriPal Taste Test Part I: Liquid Bowel Medications
  5. Notes From the Field
  6. Overuse of Pain Medications in Hospice and Palliative Medicine
  7. Inappropriate Medications in the Hospice Setting
  8. On teaching EKG's and family meetings
  9. Hospice care of the Geriatric patient
  10. Some Other Disease: A Call to Action
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Thursday, January 7, 2010

Evidence-Based Medicine in Clinically Complex Elders – Barking up the Wrong Tree?


For years, many academics (myself included) have decried the lack of rigorous clinical trial evidence to inform the care of clinically complex elders. Clinical trials of drug therapy routinely exclude patients of advanced age and those with multiple comorbidities, leading to a paucity of evidence in this vulnerable group.

However, perhaps we’ve been barking up the wrong tree. Evidence-based medicine is often ill-suited to the care of complex older adults, and more of the traditional sorts of randomized trials of drugs and devices will not give us the information we need. Consider the HYVET trial (http://content.nejm.org/cgi/content/abstract/358/18/1887). For years, observational evidence and limited trial data suggested that in the oldest old, high blood pressure was protective against mortality (the opposite of the relationship in younger people). HYVET, a randomized controlled trial which enrolled 3845 patients from 195 centers on 5 continents, found the opposite to be true. However, the study has been criticized for its lack of generalizability, since many patients were excluded from participation in the trial.

This leads to two conclusions. First, if we cannot get the data we need from this enormous undertaking, when will we ever? Second, imagine that this study did include a wider variety of patients. It would still be unclear how to apply its results. Would the results apply to a 90-year old man with multiple comorbidities and substantial functional decline, or to an 85-year old woman who is in excellent health? The great heterogeneity of the older population means that the population-averaged results that arise from a clinical trial do not necessarily apply to our individual, highly non-average patients. Subgroup analyses from studies can provide hints in this direction, but cannot truly account for the great heterogeneity of the older patient population. This is different than the traditional population of clinical trials, which with their younger, less comorbidly-ill patient samples apply more directly to the younger, less comorbidly-ill population of patients seen in clinical practice.

This doesn’t mean that we should abandon evidence-based medicine for the care of complex elders, nor does it mean that HYVET and other clinical trials offer little of value. However, the primary solution is not likely to arise from repeating traditional drug and device trials in clinically complex elders. Instead, trials that study integrative, cross-disease approaches to care in complex elders may hold greater promise, insofar as they may be more generalizable to a broad spectrum of this population and less dependent on the specific comorbidity or functional profile of individual patients. We will still need to use judgment to extrapolate study results to individual patients. However, by embracing complexity, these studies can offer a path forward that complements and may ultimately prove of greater value than the single-drug, single-disease focused interventions that are the mainstay of the traditional evidence-based literature.
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Wednesday, January 6, 2010

Reviewing the Evidence for Opioids and Cancer Growth

Eric Widera recently posted about the media's irresponsible headlines implying that opioids cause cancer growth. This is our most read post to date (over 1000 direct visits plus email subscribers).

Why was this post so widely read? Because this issue touches on a critically important therapy and the media were clearly irresponsible in their treatment of this story. The media took a story about an opioid antagonist (methylnaltrexone) potentially inhibiting cancer growth in mice, and converted this into a story about morphine causing cancer growth.

As a follow up to Eric's post I emailed the authors of the study, asking them if they would like to comment or post a response. One of the authors called me to give his opinion. He said they have avoided talking to the media, declined multiple interviews with the press, and would not post a reply on our blog. However, he did state that he believed there is strong reason to suspect that opioids may promote cancer growth, and he wanted me to read the evidence. To that end, he sent me 7 articles to review. I'd like to go over them briefly here.

  1. Singelton, J. et al. Synergistic effects of methylnaltrexone with 5-fluorouracil and bevacizumab on inhibition of vascular endothelial growth factor–induced angiogenesis. Mol Cancer Ther 2008;7(6):1669–79. The authors found that methylnaltrexone reduces the concentration of two chemotherapeutic agents necessary to inhibit cancer cell growth in vitro.
  2. Moss, J. From Bench to Clinic: Our Story with 21st Century Drug Development. Association of University Anesthesiologists Update, Spring 2009. This is a newsletter story discussing the development and testing of methylnaltrexone for treatment of constipation and potential other uses.
  3. Durieux, M. Does Anesthetic Management Affect Cancer Outcome? Anesthesia Patient Safety Foundation newsletter, Winter 2009. A newsletter reviewing the evidence for anesthetic technique influencing cancer surgery outcomes. Regarding opioids, the author notes that one the one hand, opioids have been shown to promote angiogenesis (formation of new blood vessels necessary for tumor growth). On the other hand, opioids have been shown to decrease metastases around the time of surgery in rats, likely due to a decrease in the pain-related stress response (stress can promote cancer spread).
  4. Moss, J, and Israel, R. Effects of Anesthetics on Cancer Recurrence. Letter to the editor. Journal of Clinical Oncology 2009. This letter is a review of prior studies.
  5. Moss, J, and Rosow, C. Development of Peripheral Opioid Antagonists: New Insights Into Opioid Effects. Mayo Clinic Procedings 2008. This is another review.
  6. Singelton, J. et al. Methylnaltrexone inhibits opiate and VEGF-induced angiogenesis:
    Role of receptor transactivation. This was a laboratory study where the authors found that morphine promotes endothelial cell migration.
  7. Mathew, B. et al. The Mu Receptor Regulates Lewis Lung Carcinoma Tumor Growth and Metastasis. This is the abstract that garnered so much press. In lung cancer cell lines and mice, the authors found that methylnaltrexone inhibited lung cancer growth by blocking the opioid receptor.
So 2 published studies, 1 abstract, 2 newsletters, 1 letter to the editor, and 1 review. Note that Eric discussed the two articles from Anesthesia on regional versus general anesthetic technique in the previous post. The author of one of those studies, in a letter to the editor, acknowledged that "Under no circumstances should a small retrospective study be the basis for practice."

So what is the take home message? (and I want to hear yours). I think there is evidence that the opioid receptor shows some potential promise as a target for reducing tumor growth. Is there sufficient evidence to state that opioids promote cancer growth? Absolutely not. Opioids have not been tested as potentiating tumor growth in humans. Pathophysiologically, opioids might promote cancer growth (via angiogenesis) or they might reduce cancer growth (via a reduction in the stress response).

Why is it important to not leap to the conclusion that opioids cause cancer growth? Two recent examples come to mind: hormone replacement therapy for post-menopausal women and vitamin E. Early retrospective studies (in humans, not mice) seemed to demonstrate that hormone replacement therapy led to reduced mortality. Unfortunately, large prospective cohort studies showed the opposite to be true! When researchers went back to re-examine the earlier studies, they found those earlier studies failed to account for important baseline differences in women: those who were healthier were more likely to take hormone replacement therapy, and therefore had better health outcomes that were attributed to the drug. Similarly, there was a great deal of excitement about vitamin E, including bizillions of laboratory studies that showed plausible mechanisms by which vitamin E could reduce heart attacks (antioxidant properties, etc). Again, large studies showed the opposite: people who do not take vitamin E live longer and have fewer heart attacks than people who do take vitamin E. In both the case of hormone replacement therapy and vitamin E, patients were taking the drug and health care providers were recommending treatment based on early evidence. And people died.

Some are already leaping to conclusions.  Here's a quote from a physician on the blog Medpie:
For patients due to undergo surgery for cancer, it is probably worthwhile for them to have a frank discussion with their surgeon and anesthesiologist about whether regional anesthesia is feasable (sic) and safe in their case, and whether opiate analgesia can be minimized. patients should "discuss avoiding general anesthesia and minimizing opioid medications).
As Christian Sinclair (of Pallimed) noticed, if you Google search "morphine cancer" the fourth hit is "Pain drug morphine may accelerate cancer growth | Reuters." Think of all of our patients and caregivers who, seeking information, are clicking on that link.

Let's set the record straight.
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Saturday, January 2, 2010

Palliative or terminal sedation

There is much to say - both good and not-so - about last Sunday's (December 27) NY Times front page article on palliative sedation ("Hard Choice for a Comfortable Death: Drug-Induced Sleep"). The issue is provocatively presented with an inconsistent, but clear insinuation that something may be amiss. I wonder what you all think; however, I am most concerned about the photos (Photos: Ozier Muhammad/The New York Times) which may easily be taken in, without the benefit of reading the explicating text. Front page: "Frank Foster, sleeping under sedation to relieve pain and other effects of liver cancer..." He's all alone, no one at his bedside. One may wonder, is he being drugged to death and left to die? The article continues further on in section one, on 2 full pages. Three large photos on the first of those pages are of Gloria Scott, an African American "terminal cancer patient" being attended by a white doctor. In one of the photos Ms Scott is being handed a pen by that physician to sign a "do not resuscitate" order. The caption below that one, in the NYT online photo gallery, reads "At first Ms. Scott fiercely resisted signing a 'do not resuscitate' order, but in late November, she changed her mind and signed one with Dr. Shaiova." The 3rd of these pictures is of Ms Scott asleep or in coma; the caption reads: "Early this month she was near death; her doctors said later they believed the drugs had not hastened her end." Do we believe that? These photos beg some uncomfortable questions: Has this woman made an informed set of choices, and without undue influence? The reader/observer is left wondering: Has she pushed, however subtly, into the 'no code,' the 'terminal sedation'?

We should problematize "palliative sedation" (as Alex Smith, Patrice Villars, and I attempted to do in a recent Lancet article). In fairness to the author of this NY Times article, she does point out that physicians and other hospice workers, as well as ethics committees, are working to develop clear guidelines and policies regarding this practice. But, in the article, there is also hand-wringing over it, and incomplete arguments both for and against the various forms (not fleshed out) of 'palliative sedation' ... and then those photos. It leaves the reader unsure what to think - befuddled, perhaps ... or suspicious. Re people who use the acceptability of palliative sedation as an argument for the acceptance of euthanasia, Joseph Fins is quoted as saying: People who adopt this argument say, "We know what you're really doing, it's crypto-euthanasia. Polemics really have no place at the bedside." Disputatious argumentation at the bedside, no. But clear and cogent arguments regarding how we are treating people who are suffering at the end of life, yes.






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Overlooking the Frail Years


Paula Span raises a number of interesting issues in this post on the NY Times New Old Age Blog. She presents the story of an active 70 something man who was very comfortable discussing the possibility of his death, but seemingly unable to discuss the possibility of being frail and needing help caring for himself.


As the post notes, most people will have a period (often quite long) of frailty at the end of their lives in which they will need the help of another person for some tasks of daily living. I think the popular media and many in the medical profession sometimes try to suggest otherwise, suggesting that frailty is avoidable if you just do the right things. The evidence overwhelmingly suggests otherwise. It is certainly right to encourage good health habits, including good nutrition and exercise. But it is more likely that healthy living will delay frailty--not avoid it.


I think even in Geriatrics, we sometimes oversell our ability to prevent functional decline and frailty. In our enthusiasm, we point to some intervention studies that have reduced the risk of disability. These intervention can clearly enhance the well being of older persons, and it is a shame they are not more widely implemented. But if one looks closely at these studies, the effect sizes tend to be modest, and they slow down trajectories of decline rather than stop these trajectories.


Is there any harm in overselling the ability to prevent frailty and functional decline? I think there may be. Ms. Span deals with one of these harms--it may inhibit people from advance care planning that considers what elders want to happen if they can no longer live independently.


But, I think there is another harm as well. I think it may inhibit research and policy planning that could improve the quality of life of frail persons. It may also cause the public to to undervalue the frail elderly.


There is sometimes a tendency to think of functional dependence as almost akin to a terminal outcome. We need to think much more about how frail dependent elders can maintain good quality of life. I think many of us can certainly point to very frail patients who continue to be socially engaged and seem to maintain an excellent quality of life. These elders are not included in most definitions of successful aging, but they certainly are successful agers, and we need to learn much more about how we can facilitate this type of success.
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Wednesday, December 30, 2009

Death and Taxes: It's Shaping Up to be a Busy Year


The Wall Street Journal published an article today entitled "Rich Cling to Life to Beat Tax Man." The article describes a new wrinkle in advance care planning: "families are struggling with whether to continue heroic measures for a few more days" in order to take advantage of the ostensible temporary one year lapse in the estate tax that will begin on January 1st (experts say it is not likely that Congress will leave this lapse issue alone for long; a fix could even be retroactive if put in place soon enough). It also describes patients placing provisions into the advance directives allowing proxies to make end-of-life decisions based partially on changes in the estate tax law.

How big of a problem is this? Can financial incentives postpone or accelerate death? Do changes in the estate tax code really affect whether people live or die? In 2001, Joel Slemrod and Wojciech Kopczuk won the IgNobel prize for their paper called "Dying to Save Taxes". In their paper they examined the timing of deaths resulting in taxable estates in the period surrounding 13 major changes in the estate tax. The results show a significant "death elasticity," meaning that the reported date of death responds significantly to changes in the estate tax. They conclude that, for individuals dying within two weeks of a tax reform, a $10,000 potential tax saving increases the probability of dying in the lower-tax regime by 1.6%.

Along a similar theme, Joshua S. Gans and Andrew Leigh examined what happened when, in 1979, Australia completely abolished federal inheritance taxes. Using daily deaths data, they tracked the number of deaths during the final week of June and the first week of July, 1979, when the tax code changed. As a control, they used the number of deaths during for these weeks during the years 1974-1978 and 1980-2003. In the control group, there was no significant difference in the number of deaths, but in 1979, the year the tax was abolished, fewer deaths occurred during the last week of June than in the first week of July. They conclude that approximately half of those who would have been subject to the estate tax "shifted" their deaths from the week before the abolition to the week after. They also suggest that the scheduled abolition of the US inheritance tax may lead some deaths to be shifted from the last week of 2009 into the first week of 2010.

So there is some evidence that the timing of death is elastic. What does that mean for us? Well, it may mean a very busy year. According to Wendy Greenberg, a trusts and estates lawyer, the estate tax will be reduced to a rate of 0% on January 1st. This reduction is from a maximum rate of 45% for 2009, with the tax affecting only those estates of over $3.5 million ($7 million for a married couple). Congress will likely act on this and reinstitute the tax sometime during the next year, but if current law is left standing, the "lapse" lapses itself on January 1st, 2011, when the maximum rate bounces up to 55% (with the tax affecting estates over $1 million ($2 million for a married couple)). That is a lot of change for one year, adding to the difficulties of already difficult end-of-life discussions.

References:
Kopczuk, W., & Slemrod, J. (2003). Dying to Save Taxes: Evidence from Estate-Tax Returns on the Death Elasticity Review of Economics and Statistics, 85 (2), 256-265 DOI: 10.1162/003465303765299783

Gans, J., & Leigh, A. (2006). Did the Death of Australian Inheritance Taxes Affect Deaths? Topics in Economic Analysis & Policy, 6 (1) DOI: 10.2202/1538-0653.1654

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Wednesday, December 23, 2009

Tarenflurbil for Alzheimer Disease: A novel agent meets with great disappointment

The current issue of JAMA reports on the largest trial ever conducted for a drug designed to slow the progression of Alzheimer Disease (AD). The study examined the impact of Tarenflurbil, a novel secretase modulator that reduces the concentration of toxic forms of B-amyloid. B-amyloid is more likely to be present in the brains of persons with AD, and most believe amyloid deposition plays a central role in the pathogenesis of AD. (Though there are some who question the amyloid hypothesis.)

Tarenflurbil showed great promise in mouse models and in a phase 2 study in humans. This very well powered study randomized 1684 patients with mild AD (MMSE 20-26) to Tarenflurbil or placebo, and compared a number of outcomes over 18 months. The key findings:

  • Tarenflurbil had no impact in terms of delaying the decline in cognitive function
  • Tarenflurbil had no impact in terms of delaying declines in physical function
  • Tarenflurbil had no impact in terms of improving quality of life
  • Tanenflurbil had no impact on caregiver burden
  • Tarenflurbil was associated with several side effects, and rates of discontinuing therapy were significantly higher than with placebo

There was much reason to invest hope in Tarenflurbil, because it is the first agent to be tested in a large scale clinical trial to directly interfere with a process thought to be linked to the progression of AD. Unfortunately, this study is quite convincing that this agent does not improve outcomes in mild AD.

That leaves us with the current agents, acetocholine esterase inhibitors and memantine. The extent of benefit from these agents is somewhat controversial. Most of my colleagues in the UCSF Geriatrics Division believe the benefits are generally quite small, with side effects that are underrated. The most beneficial treatments for AD, as discussed in a recent post, are team based interventions that have major psychosocial components, including a focus on caregivers.

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Judged by the Color of their Skin

I have an nonagenarian who is a racist. I don’t think you can use the words she uses to describe people of various ethnicities and not categorize her as such. She’s been my patient for about 3 years now and in this period of time I have been medically impotent in her care. Her severe heart failure goes untreated, she continues to drink, is likely depressed, and is losing weight, likely from the large mass recently found in her abdomen when she came to the hospital recently for a CHF exacerbation.

And yet, if any other provider asks her about my care, she will sing my praises. She tells everyone she can, that excepting one male physician she had many years ago, I am by far the best doctor she’s ever had. And I honestly can tell you that I’ve only managed to do two things for her: help her get the basal cell carcinoma that was slowly eating off her nose removed, and listen to her.

And listening to her isn’t easy. She has excuses for everything, why she can’t quit smoking, why she can’t keep his appointments, why she won’t take her meds, you name it. And you know what, I can tolerate that. I feel my job is to tell her she ought to stop smoking, drinking, etc, that she would likely feel better if we could get her to X, Y, or Z appointment, but it’s her job to actually do it. So I see her periodically and watch her wither away in front of my eyes.

Now I justify my actions to myself by saying this is part of a lifetime of behaviors, that she’s alienated her friends and family over the years, and that it would be foolhardy to think I might intervene in this trajectory. Yet on the other hand, I wonder, is this cognitive disability? Is this her lifelong alcohol abuse? Should I intervene against her will? Should I have intervened years ago? But that would no doubt threaten our rapport and I am uncertain that anyone could make her take her meds, or that it’s ethically acceptable to force her to do so.

But then she starts with the name calling, she talks about her grandchildren who are of mixed race and explains their failures in terms of their ancestry. She fires caregivers that I’ve worked hard to set up in her home because she thinks they can’t speak English and are “just a bunch of foreigners”, though she’s really deaf and sometimes has a hard time understanding ME. She’ll turn around on one hand and say, “You know I like you, Doc. I think we might be related.” And I respond, “I think we’re all brothers and sisters some way or another.” But I know the words don’t sink in. I try and reason with her, and when that fails, to set limits on her behavior. When she was in the hospital, she had some rather unpleasant words about some of the staff and I told her that she could think that but she needed to respect them and her behavior was unacceptable.

You know, part of me thinks that eventually this generation who lived during segregation will die, just like the generation of slave owners who lived on after the Civil War. I can only hope this will continue to diminish as an issue. But in the meantime I think, I am here to serve. I don’t chose my patients, they chose me. As long as she’s not hurting anyone (except maybe herself), I think: If I don’t care for the racists, who will? In our last days, don’t we all deserve someone to listen to us, even when we say or have done some pretty egregious things? I can only hope someone will listen to me someday, even if I refuse to take my meds, miss my appointments, and drink too much, and do me no harm.

NOTE: facts changed to protect the identity of the patient.
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Monday, December 21, 2009

Stocking Stuffers for Your Favorite Geriatrician


Don't know what to get your favorite geriatrician for the holidays? Out of ideas as you bought your geriatrician a snuggy last year and this year amazon.com is telling you that the healthcare reform package you ordered is unlikely to be delivered in time for Christmas? Well, good news! The BMJ Christmas edition is here and it is chock-full of articles that you and your Geriatrician will be sure to enjoy. Here are two samples:

  • Perceived age as clinically useful biomarker of ageing. Your geriatrician is probably tired of looking up prognostic indexes to aid in complex decision making around age appropriate cancer screening. It turns out that there may be an easier way. A group from the University of Southern Denmark report that someone’s perceived age, or "how old you think someone looks", correlates with lifespan. The researchers photographed 1,826 Danish twins older than age 70. These photos were then shown to a panel of 20 geriatric nurses, 10 young male student teachers, and 11 older women, who evaluated the perceived age of each twin. Dannish Death records were subsequently used to track the survival of the twins over a seven year period. The results show that the member of each twin set who looked older was more likely to die first, even after adjusting for chronological age, sex, and other biomarkers of aging.
  • Lying obliquely—a clinical sign of cognitive impairmentGeriatricians will jump for joy once they are taught the “oblique sign”. A group of neurologists from Germany decided to determine if patients who fail to “spontaneously orient the body along the longitudinal axis of a hospital bed when asked to lie down” are more likely to have cognitive impairment. They tested 110 inpatients aged 60 or more by asking them to lie down from a sitting position on the side of the examination bed. The researchers then took a photograph of the patient in bed to determine the “obliqueness” of the patient. The results show that an “angular deviation” of at least 7° predicted cognitive impairment according to the three different cognitive tests. Their conclusion – “suspect cognitive impairment in mobile older inpatients with neurological disorders who spontaneously position themselves obliquely when asked to lie on a bed.”
Oh, but there is so much more.  Don't miss the articles on the use of "Nellie the Elephant" as a learning aid during CPR (and why its use should be discontinued), Ageism and the Economist, and how Santa Claus is a public health pariah.
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Friday, December 18, 2009

Cheating Death: A Book Lost in Definitions


"Death is not a single event, but a process that may be interrupted, even reversed. And here's the exciting part – at any point during this process, the course of what seems inevitable can be changed. That is precisely what we are going to explore in this book: the possibility of cheating death."
These are the words of Dr. Sanjay Gupta, a practicing neurosurgeon, the chief medical correspondent to CNN, an almost Surgeon General, and now author of the book Cheating Death. Cheating Death is, in Dr. Gupta's own words, a "medical thriller". This is an apt description considering the dramatic prose that the author infuses into this book. Dr. Gupta lavishly uses inspirational and exceptional real life stories to make his point that medical science is blurring the distinction between life and death. His tale weaves the science of hypothermia protocols, CPR resuscitation techniques, hibernation and suspended animation research, near death experiences, and fetal surgeon into a gripping argument that if you and your physician “fight” hard enough, and don’t “give up”, you can overcome practically everything, even death [insert collective GeriPal groan here].

I completely understand that I am not the intended audience of this book. I also understand that this book is intentionally sensationalistic, as most mass journalism is today. However, even if I resign myself to read this book as a piece of modern infotainment, I am still unable to get past its biggest flaw – the complete lack of consistency when using the term “death”.

Dr. Gupta does an excellent job near the beginning of the book describing death as not as an event, but a process. He views it as an "ongoing chain of events that might be reversed with the right intervention". This sounds like a similar definition to those described by some in the palliative care field when discussing DNR status with patients ("If you were to die, would you like us to try to resuscitate you"). It is also similar to the description of death used by the character Miracle Max in the Princess Bride when describing a seemingly lifeless body in front of him:
"It just so happens that your friend here is only MOSTLY dead. There's a big difference between mostly dead and all dead. Mostly dead is slightly alive."
Dr. Gupta however seems to jump in and out of the process of death definition throughout the book. His anecdotal accounts of people who "cheat death" range from people who were "dead", "clinically dead", "virtually dead", "nearly frozen to death", and "returned from the dead". Sometimes he uses these various terms interchangeably when discussing the same patient. Even when he describes death as a cascade of physiologic and metabolic events, he hedges by saying that these are steps "toward death".

This lack of clarity or consistency comes to a climax in the chapter titled "What Lies Beneath". Dr. Gupta seemingly confuses "brain death", coma, and persistent vegetative state, something that I find unforgivable in a book written by a neurosurgeon. His main example was that of Mark Ragucci:
"You won't find a better example than Ragucci. His doctors might have given up, but he can tell the story today because one doctor didn't – and because something inside Ragucci was able to bounce back, something that gave him the strength to cheat death: brain death."
Mark Ragucci was never declared brain dead. He was placed in a medically induced coma for refractory seizures and suffered severe brain injury from strokes, but at no point in time was he declared brain dead (Dr. Gupta’s definition does seem to change later in the chapter when he states that Mark was “nearly brain dead”). Am I reading too much into this considering the lack of clarity of this chapter? I would say no. The publishers own synopsis of the book makes clear where the book stands on the concept of brain death:
Extended cardiac arrest, "brain death," not breathing for over an hour-all these conditions used to be considered inevitably fatal, but they no longer are.
When discussing the diagnoses of "brain death, vegetative state, and minimally conscious state” Dr. Gupta goes on to say that "a patient may improve or decline from one state to another". Really? Declaring someone dead by brain death criteria does take some expertise, and there have been some misdiagnoses reported, but to make a statement that patients who meet the criteria for brain death can improve and "cheat death" is reckless and harmful. There is a great deal of misinformation about brain death in the lay public and in the media. Dr. Gupta's use of the term "brain death" only worsens this confusion.

I will say, in defense of Dr. Gupta, attempting to define death is an incredibly complex task, as seen by the great deal of literature attempting to discern what death actually means. The "process" definition of death as used in this book, one in which someone can go in and out of death by having physicians who "don't give up", is lacking one critical concept - permanence. Once someone is dead they remain dead. The "irreversible" nature of death may depend on someone's cultural and spiritual beliefs. For some death may not be rooted in science or physical laws; death may only mean that the soul, or metaphysical spirit, no longer animates the body. However, from a medico-legal and clinical aspect, permanence is integral to any societal criteria of death. Death certificates, clinical trial outcome data, practical needs of family members, and organ donations rely on the irreversible nature of death.

Dr. Gupta put in a tremendous amount of work to search for the most extraordinary and sensational cases in order to make his story dramatic. Yet, in doing so, he loses sight that everyday stories do a better job in describing the fine line between life and death. Dr. Gupta may do well by heeding author Mitchell Stephens warning:
"When journalists confine themselves to the search for the violent or the miraculous, not only do they paint a grotesque face on the world, but they deprive their audiences of the opportunity to examine subtler occurrences with larger consequences".
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Thursday, December 17, 2009

My last few days with my grandmother


It was the a Monday morning in November when I got the first call from my uncle Gili - my last remaining grandmother, Savta Rina, was hospitalized. She had had diarrhea for a few weeks and got dehydrated and so was admitted to the hospital.

A few months before I took my family to Israel, mostly to visit Savta. She wanted to see my girls, her only great-grandchildren, before she died. She used this line a lot - “before I die” - having no compunction about addressing the inevitability directly or evoking guilt to hasten the desired visit. She always was a practical and smart woman; as a teenager she, along with her two sisters, survived the concentration camps, then immigrated to Israel and formed the backbone of their new family. Right before our last visit she had been hospitalized also, and seemed none the worse for wear, but this time Gili sounded a bit more worried. She had been eating much less and losing weight.

My grandmother was a poster child for smart decision making with very little education. In her 40’s she quit smoking and in her 50’s she lost weight and kept it off. A lifelong vasculopath and bad hypertensive, she walked her way out of bilateral claudication, survived a few silent MI’s and refused a bypass 10 years earlier, developing collaterals in her coronary circulation. A year ago she began to give her possessions away. Lately she had developed atrial fibrillation, nausea and decreased appetite. She had a bit of abdominal pain. She began having falls. She developed worsening renal failure. She refused a colonoscopy. She joined the Israeli equivalent of a “right to die” society.

On Tuesday Gili called from the hospital – Savta’s breathing was much worse and she needed oxygen to keep up her saturation. He asked if I wanted to speak to Savta. When I did she sounded bad – two to three words at a time and wheezy. I called my dad – who was on a Buddhist retreat in Arizona and left a message that he needs to go to Israel. I called my sister, who was planning a trip to Israel anyway and told her to think about moving the trip up. Then I spent the rest of the morning working in the hospital (I am a primary care doc in a county system). In the afternoon my sister called and said she had moved her trip up. It’s funny that I told everyone else to go but hadn’t yet decided if I would, but when my sister called I decided to go too. Before going to bed I got word that Savta said she would “wait for us.” Knowing this woman’s history of exerting her will on life I had no doubt that she would.

On Wed morning my wife Lori drove me to the airport and I got on a plane. It would be 22 hours or so later that I would land in Tel Aviv. Layover in Newark was short and my parents would be on the same second leg going to Israel.

When we got to Israel on Thursday afternoon I found my sister at the airport (she had landed the hour before). We got into the rental car and went straight to the hospital. Savta was there – in much better shape than I thought. Her breathing had gotten better. I later pieced together that when I had spoken to her 2 days before she had simply gotten fluid overloaded, and while I was in route had gotten fairly effective diuresis. She was tired but conversational and barely needed oxygen. She said she wanted to go home. I left thinking I had sounded a false alarm. I was exhausted from travel and went back to Savta’s apartment to sleep. Before leaving the hospital I found out that Israel does have a version of home hospice.

Twenty three years earlier, at 63, three years after being widowed, my grandmother entered a relationship with her downstairs neighbor, Ephraim, that was probably more satisfying than her marriage had ever been. Ephraim was an orthodox Jew, an intelligent, gentle man, still working as a Yeshiva principle into his 70’s. In the first, secret years of their relationship (my grandmother did not want to raise her widowed sisters’ jealousy) they would have coffee and chat in the evenings. Ephraim would drive Savta Rina to do her shopping. When he proposed marriage a few years later my grandmother declined (“why would I want to start keeping a kosher kitchen and cooking for a new man at my age”), but their friendship only strengthened. Now, two months out from his bypass surgery, Ephraim was staying at his daughter’s house but came to visit Savta Rina every day in the hospital. My sister and I would stay in his apartment for the next few days.

Having gotten good sleep, I woke up with delight on Friday morning. Knowing that Shabbat was coming, my sister and I went shopping to stock up. Family friends had filled the fridge with great home-cooked food but we were hankering for our favorite local comfort foods. I love shopping in my grandmother’s neighborhood – a lot like the outer Richmond district in San Francisco – you can walk to so many great places within a few blocks and enjoy the Russian delicatessens with amazing, fresh produce, diary products and good rye bread.

Shopping turned out to be our undoing. By the time we made it to the hospital at 11AM the doctor had already left. Friday, which used to be just a short work day when we left Israel 25 years prior had become a full weekend-type day in Israel. On-call physicians only. No one willing to discharge or have a family meeting. My sister and I had an agenda – get my grandmother home for hospice care. She had been so clear about her wishes – no intervention, die in peace. When we came in on Friday she told us that the worst decision she ever made was going into the hospital. Now we would be stuck there till the weekend was over on Sunday.

The hospital was pretty good actually. The nurses came on time to turn Savta – too weak to walk at this point and down to less than 80 pounds, she really was skin and bones. The staff was also not too pushy with meals or meds – which surprised me given my expectation of a “Jewish mother” type of institution. Best of all, they let one of us spend the night in the empty bed next to my grandmother, and didn’t seem to care about enforcing visiting hours. My grandmother had two roommates, both there for angina. They were both chatty and friendly, and didn’t mind me spending the night.

After a family dinner at my uncle’s house, where we clarified the fact that we all agreed that being back home is what Savta wants, I went back to the hospital Friday night to spend the night next to her. The Israeli family, without exception, knew no one who died at home and had no idea what to expect. They deferred to my sister and I almost entirely.

Until we could get a discharge, my reason for being in the hospital was to protect my grandmother from too much intervention that she didn’t want. My first task was to go and try to change her status to “no code”, which I was informed by the nursing staff was not possible without a courthouse-approved legal document. It was not a legally-protected option in Israel, and hospitals in general were very interventional. The nurses all understood what I was trying to do, and I was told the best thing to do would be to speak with the department head after the weekend and that my grandmother’s wishes would be “unofficially” honored. The theme was repeated on the next day when my grandmother asked to go outside for some fresh air – the on-call physician (an overwhelmed resident) refused us permission to take her off her monitor. Finally, when I pushed and asked who else I should talk to, he said to me “I will not give my permission, but what you do without telling me is none of my business.”

I tried to sleep next to my grandmother in the empty bed, but the hospital noise and lights, jet-lag and roommate snoring combined to allow me only a half-hour or so. My Savta had gotten a sleeper and slept soundly – her breathing at night so shallow that I worried she was about to die a few times. By morning she awoke and was alert, but too weak to speak more than 1-2 words at a time. In that state it was still interesting to see her shvitzing (bragging) instinct intact – when the weekend doctor came to round she pointed at me, smiled, and said simply said “doctor”. She consistently asked to leave the hospital. In the morning she asked for beer or coffee – I got her some coffee which she loved, drank 2 sips of, and barfed. She would consistently throw up anything substantial from there on out. When reinforcements came (with beer for Savta) in the morning I left to go back and sleep.

Saturday evening was more back and forth from the hospital. My youngest cousin Noa – who had cut short a U.S. trip would take the night shift. Savta would barf again and became less and less verbal.

By Sunday morning she would mostly point and blink, speaking when she had to only. She complained of back pain. We waited impatiently for the doctor. He came and did rounds, and when we spoke tried to impress us with medical jargon. He was middle-aged and had the look of a career government worker who was a little burnt out. The pinky finger on his right hand took a 90 degree lateral turn at the PIP joint. This fact reassured me more than anything else – a man who would tolerate imperfections in his own body clearly would be able to have some flexibility with regards to Savta’s wishes. This proved true - when I mentioned home hospice he said “no problem”. He had no trouble writing for a fentanyl patch and some ativan as needed for anxiety. He discharged her home within two hours of our request. The whole morning Savta kept pointing at her watch – now eerily sagging off of her wasted forearms all the way near her elbow – impatient to go home.

I rode home in an ambulance with her. In a quintessentially Israeli moment the ambulance driver pulled off to the side of the road where another car was waiting. He asked me to wait “just a few minutes” while he tried to get his GPS unit fixed. After 10 minutes I started to make a scene and we drove off. He was remarkable efficient getting my grandmother up the stairs. My grandmother would die in the same apartment she had lived in for the past 50 years.

The density of urban living in Israel creates an intimate sort of codependent dysfunction that I had been glad to escape as a teenager. Now I saw some benefit – within 2 blocks of my grandmother house was both her clinic (where the charge nurse knew her well and was happy to make house calls) and a place where we could borrow supplies for the house. Wheelchair, bed rails, a hospital bed, bedside commode – all were obtained within hours and essentially for free. Hospice per se was impossible (only available in Israel with a cancer diagnosis), but my sister, also a primary care physician, was able to set up a hospice equivalent. She had done a few palliative care rotations in med school and residency, and did a masterful job of anticipating, coordinating care, titrating meds and doing the day-to-day physical care. The biggest trouble was getting opiates out of her PCP – but a strong case of advocacy from the clinic charge nurse did the trick. My father, a computer scientist, was remarkably unsure of what to do or how to help.

I flew back just 5 days after I arrived. My grandmother – barely verbal when I left, looked disappointed when I told her I was flying back. Her last words to me before I left were to make sure I got some money out of her purse to help pay for the flight. As I checked in over the next few days, my sister reported Savta slowly went more and more inwards, eschewing speech or touch towards the end. She made a single effort to visit a little with the stream of well-wishers and family coming through the apartment, but then let that go too. One cousin wanted to call 911 as things advanced, but my family talked some sense into him. As I was going in to see a newborn in my primary care clinic, three days after my return, I checked my email and saw the message that she died.
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