You’ve all been there – the elderly couple shuffles into your office, peering through oversize glasses, slightly disoriented but helping each other out. Did you ever stop to think how they got to your office? They almost certainly drove – but should they? Shouldn’t it be their children’s job to tell them to stop?? Focus groups have shown that it’s the physician they look to for guidance (sigh).
Luckily, there are excellent resources to guide you in evaluating driving impairment and to let you know what the laws are in your state. Google “AMA older driver safety” for a wealth of information. It’s free and you don’t have to be an AMA member to access it. There are even disease-specific recommendations from areas as diverse as ophthalmology, cardiology, and neurology. The AMA also has an ethical opinion on impaired drivers and charges the physician with recommending driving restrictions and, if needed, reporting impaired drivers to the Department of Motor Vehicles (DMV).
Dr. Karen Cross recommends a 6-step approach. (1) Identify patients at risk of impaired driving; (2) find out if the patient is still driving; (3) assess their driving skills; (4) make recommendations with referral for a driving evaluation – try www.aded.net for resources; (5) counsel the patient about transportation alternatives; and (6) if all else fails, report the driver to the DMV.
A little more on identifying patients at risk of impaired driving. Driving requires vision, both peripheral and focal. It requires physical activity – from opening the car door to moving one’s foot from the gas to the brake. Reaction time is also important, along with memory and the ability to concentrate, especially when distracted. Many of these skills can be evaluated in the office or home setting. A driving evaluation may be useful when there is conflict over the patient’s abilities. Unfortunately, these are not covered by Medicare or most insurers and can be expensive.
Restricting a patient’s driving can be life altering, resulting in depression, social isolation, and impaired self-esteem. There’s even an increased risk of long-term-care placement if an elderly person can no longer drive to meet their daily needs. On the other hand, there is the risk of injury to themselves or others. It is a physician’s responsibility to make the tough call and recommend driving restrictions when they are needed. Remember to check the AMA website for state-specific tools to support your recommendations.
This is Part 3, the final part, of a multi-part series.
My mom remained in the ICU for a total of 3 weeks, failing extubation twice due to laryngeal edema requiring emergent re-intubation and eventually requiring a tracheostomy in order to facilitate ventilator weaning. She finally was able to wean off the ventilator after 3 weeks and was discharged from the ICU to step down and then acute rehab after 3 ½ weeks. The tracheostomy was successfully removed ~ 10 days after she left the ICU. Her Parkinson’s medications were changed and she has not experienced recurrence of the rapid breathing that precipitated her hospitalization. The palliative care team continued to visit with my mom and dad regularly, offering support and comfort and providing me with updates on my mom’s medical condition and comfort as well as my dad’s physical and emotional well-being. It was incredibly reassuring to have this additional layer of support and assistance.
My mom is now in a subacute rehab facility and gradually recovering from the significant physical debilitation she suffered as a result of her prolonged ICU stay. My mom, fortunately, doesn’t remember any of her ICU experience (although she does have bad dreams about breathing, interestingly). Given her atypical disease presentation and course to date, we don’t know exactly what the future holds, as we rarely do. I do know that palliative care was an essential component of our coping with her “uncertain prognosis” – providing me with peace of mind and offering warm, caring, nonjudgmental support for my dad, essential for his coping with those difficult days in the ICU. In this case, the “hope for the best” was the part of palliative care that my dad needed – as he was already “preparing for the worst”.
This experience makes me wonder how many other patients and families who are similarly experiencing an “uncertain prognosis” do not have the benefits of instant access to an expert palliative care team. I feel incredible fortunate that my mom was hospitalized in a setting where such access was seamless – afforded because I am privileged to work with an incredible team of palliative care professionals. While this may be only an “n of 1” trial of the experiences of a single a family in distress, our experience reinforces the beneficial role of concurrent palliative care in these uncertain situations. The challenge remains – how do we communicate this and ensure widespread access?
This is Part 2 of a multi-part series.
Approximately 1 week into her ICU stay, when my mom wasn’t making any progress on ventilator weaning, I was called by the palliative care team asking if they should “formally” consult. They had been visiting daily but not officially consulting – introducing themselves as “Jean’s friends” – who happened to be from palliative care. The ICU attending had tacitly agreed to the consult, telling the palliative care team, “whatever Jean wants”. My initial reaction was no, we didn’t need that, we knew that she potentially could have a poor outcome and were talking openly about it. If anything, I told the palliative care team, my dad needed a ray of hope, not a discussion about the “what if’s”. It was an eye-opening moment for me – to consider the “meaning” of requesting an official palliative care consult and to confront my own perceptions and biases, despite intellectually knowing better. Was I falling into the same “it’s not time yet” mindset that frustrates us so frequently as palliative care professionals? Why would making it “official” be any different from the daily visits that the team was already doing? How would my dad and my siblings perceive my request for an “official” palliative care consult? Would they think that I had “given up” by recommending a palliative care consult? Why didn’t I trust what we do so well in palliative care – starting with assessing the patient (if able) and family understanding of the current situation and addressing identified needs? Why couldn’t palliative care be as much about “hoping for the best” as it is about “planning for the worst”? I told the palliative care team that they needed to “hit me over the head” if I was in denial or not thinking rationally about this clearly reasonable request.
Why did this question give me such pause? At the time of her hospital admission, my mom did not have a terminal diagnosis. While she clearly had a chronic disease, it was just that, chronic. She wouldn’t have been described as having an “advanced illness” or a “serious illness” –phrases that we use in describing the target population for palliative care. In fact, despite her Parkinson’s diagnosis, she was quite functional, both physically and cognitively. Her current situation was thought to be more due to a medication reaction than to her underlying disease process. That said, here she was in the ICU, failing to wean from the ventilator. She was the epitome of an “uncertain prognosis”. Ultimately, I agreed to an “official” palliative care consult – both to legitimize the visits that they were already making and recognizing that even as a palliative medicine expert, I had significant “blind spots” when it became personal, not realizing the unspoken assumptions and perceptions that are associated with palliative care. And, as it turned out, the palliative care team, after visiting with my dad that same day decided not to formally consult, continuing to visit as “Jean’s friends”, deciding that they would do more good in maintaining that relationship than in announcing that, given my mom’s potentially grave prognosis, they were now “officially” consulting.
Welcome to the monthly edition of Palliative Care Grand Rounds the monthly review of the best of hospice and palliative care content from blogs. We started in February of 2009 and are almost done with our second full year. To see previous editions of Palliative Care Grand Rounds go the http://palliativecaregr.blogspot.com/.
This summer has been a exciting month for palliative care and hospice advocates. At the beginning of the month we were still taking in all the attention form Atul Gawande’s article in the New Yorker titled ‘Letting Go.‘ And then in the middle of August we had the ground breaking research published in the NEJM demonstrating early palliative care improves QOL, reduces depression and potentially can improve survival.
So I thought we could start with blog posts relating to those two big tent poles.
The Gawande Article
People were reflecting on the writing of Atul Gawande and I think there is a lot to learn from how he tells his stories. It may help in how you give a presentation or write articles or blog posts of your own. My favorite was a blog called ‘Not Exactly Rocket Science’, where blogger Ed Yong writes on ‘Deconstructing Gawande – why structure and narrative are important.’ Also check out Bob Wachter’s blog piece on Atul Gawande and the Art of Medical Writing. He writes:
In this month’s piece, Gawande continues to tackle the most important healthcare issues of our day. By doing this with such clarity and beauty, he makes us all a little smarter, wiser, and more sensitive. His writing is a gift.
Debra Bradley Ruder from the GrowthHouse blogs Goodbyes writes on the Gawande article as well.
The NEJM Study
Both Geripal (Alex Smith) and Pallimed (Lyle Fettig) jumped on the NEJM research quickly and provided really helpful insights into the research that you wouldn’t get just reading the New York Times or other media sources. Between these two posts there are currently over 35 comments! Several days later Drew Rosielle let the results marinate with him a bit and the result is a tasty dessert highlighting the implications for our field in his Pallimed post ‘You had me at improves HRQOL.’
Diane Meier jumped into blogging and wrote a good piece at the John Hartford Foundation blog, that was picked up my the (general medicine) Grand Rounds and got 2nd billing. Many other key blogs covered this as well including:
- Center for Practical Bioethics
- Hospice Foundation of America
- AAHPM blog
- Palliative Care Success (good one on applying the results of this study)
- db’s Medical Rants
- Science Codex
- Freeforall – A health policy discussion
- Right Truth – Palliative Care Improves Survival?
- American Cancer Society – Dr. Len’s blog
Other great bits
- Joanne Kenen has done a number of stories on palliative care issues and got a lot of feedback on her piece in Slate magazine about palliative care issues in the emergency room. She had a great follow-up piece with on her blog at The New Health Dialogue about the challenges to why these conversations don’t necessarily happen in a primary care setting.
- You may have heard of a new breed of patients: the e-patient. One of the vanguards in the e-patient movement is Dave deBronkart who recently wrote a book Laugh, Eat and Sing Like a Pig. He published an excerpt on KevinMD that is a must read and made me go buy the book too.
- You don’t see many CEO’s of hospitals blogging and no one does it better than Paul Levy. He had a great post about visitng patients in his hospital and the role of hope that I think many of us could identify with. An excerpt:
Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone’s character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time — whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.
- In another post Paul Levy also discusses the case of the ER staff who took pictures of a dying patient and posted them to Facebook. Obviously this was a dumb thing to do, but people still did it so it begs the question, is this an issue of social media is bad or lack of professionalism? Read ‘Blocking Facebook won’t stop stupidity’ to find out.
- Eric Widera at Geripal noted the findings of the NEJM study may impact how we look at palliative care in nursing homes as well with his analysis of a recent study in the Journal of the American Geriatrics Society. How can geriatricians and palliaticians ( I just made that up) work closer together?
- AAHPM Board member and PC-FACS editor Amy Abernethy (with Donald Taylor) blogs at Health Affairs on End of Life Savings: The Fools’ Gold of Reform. An excerpt:
It is doubtful that a focus on reducing EOL spending per se will result in as much savings as is often assumed, for one simple reason: The concept of the last year of life is inherently retrospective. You do not know when the last year of someone’s life started until it ends. The stylized fact that leads to the assumption of wasteful EOL spending., i.e., 1 in 4 dollars spent on care in the last year of life, is based on an inherently retrospective concept that does not translate easily into the prospective decision-making that would be needed to reduce wasteful, futile or harmful spending in the last year of life.
- The anonymous blogger Hospice Doctor writes about going to funerals and the impact it has on our lives ina ddition to what it means to families. An excerpt:
And then I understood. I wasn’t crying for him. I was crying for me.
I cried because I couldn’t imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn’t imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn’t imagine that my life, already a lot longer than Rob’s, would ever have that kind of meaning and impact. I understood then that my patient’s short life was telling me to live the rest of my own life better — to be warmer, and more open-hearted, and more loving.
- Frances Shani Parker from the Hospice and Nursing Homes Blog found a great video on YouTube from the EPEC-O series featuring Charles Von Gunten on burnout and wrote a post about a recent study from the Mayo Clinic on physician burnout.
- Richard Smith blogs over at BMJ about Contemplating my deathbed and discusses the various regrets people may have and hot make sure you don’t have so many regrets yourself! An excerpt:
people—actually mainly men—wished that they hadn’t worked so hard. They “deeply regretted spending so much of their lives on the treadmill of a work existence.” My wife would say that I work all the time, but I live a life where work and play are not easily distinguished. Is writing this work? It doesn’t feel like it to me. Tomorrow I’m off to give a talk at a science festival in the Austrian Alps. Is that work? The truth is that even in the most serious jobs I’ve always let the appealing (and often frivolous) come before the serious.
- Alex Smith from Geripal created this very funny animation about trying to use your great communication skills honed in palliative medicine at home when your spouse asks you to ‘take out the trash.’ My favorite line: “I wish the trash were taken out but unfortunately it has not been”
- Brian Vartabedian of the very excellent blog 33 charts found an old ad for senna that you may want to bring to your next IDT.
- No one likes to say the words death or dying, but we know it is important to be able to convey these messages with honesty and in an individualized manner. Schott’s Vocab at the New York Times asked readers for different ways you could euphemize ‘dying’. I will warn you some are coarse, some poignant but check out some of the 845 comments and counting for ways to say ‘Kick the bucket.’
- And finally we have heard that Oscar the nursing home cat that can predict the impending death of patients has a movie deal based on the book. Let’s hope they get an advisor on the movie who is knowledgeable about hospice.
So as you can see there are many people talking about the difficult things people don’t want to talk about. We are not alone in wanting to provide good quality care for patients and families facing with life-threatening illness. Sometimes with a little humor is a tough time, sometimes with fantastic insights into what it means to be alive. Go read and support the things that impact you with a comment, Facebook ‘like’ or email to a colleague.
PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.
The AAHPM Delegation to the American Medical Association (AMA) House of Delegates welcomed back a good friend and effective representative at the AMA’s 2010 Annual Meeting in Chicago, held June 12-15. Dennis S. Pacl, MD FACP – who was instrumental in the securing the Academy’s seat in the House and once served as its delegate – rejoined the team as Alternate Delegate, replacing Ron Crossno, MD CMD FAAFP FAAHPM, who is now focused on serving the Academy as its President Elect. I was pleased to accept the appointment to fulfill Dr. Crossno’s term on the AMA Pain and Palliative Medicine Specialty Section Council (PPMSSC) and will serve as Acting Vice-Chair through November 2010. Aided by key AAHPM staff – including CEO Steve Smith, Jackie Kocinski and Laura Davis – the Academy’s small, but effective delegation enjoyed another active and successful meeting.
Protecting and Expanding Past Achievements
The AMA periodically reviews established policies to ensure their relevance over time. After acceptance of its report on the ethics of palliative sedation to unconsciousness (AAHPM Bulletin, Summer 2008), the AMA’s Council on Ethical and Judicial Affairs (CEJA) planned to “sunset” an older policy that addressed decisions at the end of life. This older policy included concise definitions of key terms used in palliative care and clear statements about the ethics of withholding and withdrawing care outside of the realm of palliative sedation to unconsciousness. The AAHPM Delegation testified about the older policy’s enduring relevance, and the House of Delegates retained it as AMA policy in deference to the Academy’s continuing interest.
The AAHPM Delegation and PPMSSC also offered support to a passed resolution that asked the AMA to recognize, yet again, the benefit of hospice at the end of life and to encourage attending physician collaboration with hospice staff who are caring for their patients. This resolution will result in an AMA study of the Medicare Hospice Benefit and issues related to access issues for eligible patients. Your delegation expects the Academy will be involved in the development of this AMA report.
VA Physicians’ Access to Prescription Drug Monitoring Programs (PDMPs)
In April 2010, a member of the AAHPM Public Policy Committee brought forward for discussion a directive from the U.S. Department of Veterans Affairs (VA) Office of General Counsel (OGC) that restricted VA physicians from participating in state Prescription Drug Monitoring Programs (PDMPs). The OGC directive is based on concerns about patient privacy and informed consent issues inherent to PDMPs. At the AMA meeting, the Kentucky delegation introduced a resolution that opposed the OGC directive, which afforded a welcome opportunity for the AAHPM Delegation to advocate aggressively for Academy members who practice in VA hospitals.
In reference committee hearings, AAHPM testified in favor of Kentucky’s resolution based on three principles. First, the Academy argued that VA physicians should have access to the same prescription data as non-VA physicians as a matter of fairness and equity. Secondly, as evidenced by recent U.S. Food and Drug Administration (FDA) efforts to create a Risk Evaluation and Mitigation Strategy (REMS) for long-acting opioids, all physicians share a role in creating a balance between protecting patients’ legitimate access to controlled medications and assuring the public’s safety; PDMPs represent useful tools for achieving that balance. Finally, the AAHPM noted that while the OCG’s concerns about privacy and consent issues are prudent, they do not automatically trump issues of public safety, civil justice and professional autonomy from an ethical or legal standpoint.
Other Achievements in the AMA House
AAHPM co-sponsored a resolution with the American Geriatrics Society (AGS) and other specialty allies, urging the AMA to recognize an ongoing need for physicians who care for older adults to be competent in geriatric care and encouraging adequate geriatrics training in medical school and graduate education. This resolution passed with broad support, and it parallels Academy efforts to incorporate palliative care education into medical school and graduate curricula.
Lastly, through its involvement in the PPMSSC, AAHPM supported the acceptance of a report by the AMA Council on Science and Public Health (CSAPH) that addressed recent scientific findings on the pathogenesis of neuropathic pain. This included a recommendation for increasing the use of the term “maldynia” and integrating the objective concept of neural injury into the subjective experience of chronic neuropathic pain, a practice that would potentially benefit patients who suffer from disability related to neuropathic pain.
(Any AAHPM members interested in learning more about the work of AMA or joining the AMA should contact Chad Kollas, AMA Delegate, at email@example.com or Dennis Pacl, AMA Alternate Delegate at firstname.lastname@example.org.)
Saudi ARAMCO Medical Services Organization
May 24-26, 2010
I participated in a fascinating international medical conference at the Saudi ARAMCO hospital in Dhahran, Saudi Arabia. I was invited to speak on palliative care topics during a geriatric and palliative care conference by Dr. Richard Dupee, chief, Geriatrics Service, Tufts Medical Center. Dr. Charles Cefalu, a geriatrician at Louisiana State University joined us as a speaker.
During the conference we spoke about a number of typical geriatric topics including the management of behavioral problems in dementia, the evaluation and prevention of falls and urinary incontinence. In an overview of the concept of palliative care, I discussed the evaluation and treatment of delirium, talked about artificial nutrition and hydration and discussed techniques for difficult conversations among other topics. I found discussing many of these topics challenging given the vast cultural differences seen in the Arab world.
While I wasn’t lecturing I met with a number of physicians, nurses and hospital leaders and discussed hospice and palliative medicine concepts. The hospital is interested in establishing a palliative care service as well as a home health care service, but they face significant cultural barriers. For example the concept of “Do Not Resuscitate” is only very recent development in the hospital and the concept is still not widely endorsed by many physicians, patients or families. I got the impression most patients and families expect to have resuscitation attempts no matter the underlying disease process or prognosis.
When I discussed the lack of evidence of benefit for gastrostomy tubes in patients with advanced dementia, many in the audience voiced anecdotally based skepticism. It appeared to me that patients, families and physicians simply expect patients with advanced dementia will receive tube feedings. Additionally the physicians mentioned they are prohibited from prescribing strong opioids for non-malignant pain and methadone is not available in the country of Saudi Arabia.
Despite these challenges the staff is ready to proceed with developing a palliative care program and home health care. It will be interesting to see how the significant cultural challenges will impact the progress of their work, and I look forward to working with them in the future.
I often encounter misconceptions about elder mistreatment. The following are the most frequent misconceptions and my responses to them. Please let me know by your replies if you agree with the following.
1. Elder Mistreatment cannot or should not occur with good hospice or palliative care.
Elder mistreatment occurs even under the best of hospice or palliative care. Hospice and palliative care patients and families have many risk factors for elder mistreatment including caregiver stress, functional and cognitive decline, increased isolation, and increased dependency. The interaction of their decline and pre-existing psychosocial dynamics make these patients high risk for mistreatment. While an interdisciplinary team may reduce or mitigate the risk, the team cannot eliminate the risks in these complex cases.
2. The responsibility to investigate elder mistreatment belongs to the social worker.
The social worker is not equipped on her own to determine elder mistreatment. She does not have sufficient medical background or training. Because elder mistreatment is as much a medical problem as it is a social one, clinicians need to be involved. The team physician should exert leadership in assessing the medical aspects of mistreatment, such as decision making capacity, suspicious physical findings, and medication over-dosing or under-dosing. Addressing elder mistreatment is the responsibility of the entire team.
Investigation of elder mistreatment is a responsibility that belongs to Adult Protective Services, the Ombudsmen, or law enforcement. Hospice and palliative care social workers do not have the forensic resources to perform an adequate investigation.
3. Elder Mistreatment must be confirmed before it is reported.
The threshold for reporting is reasonable suspicion not confirmation. The team does not need to confirm the mistreatment before making a report. As long as the team believes a reasonable likelihood mistreatment occurred, a report should be made. Again the responsibility to confirm mistreatment rests on the receiving agency, not the reporting party. The hospice or palliative care team does not have the forensic skills necessary to confirm mistreatment.
4. The patient or family will be upset if an Adult Protective Services (APS) report is filed.
If the hospice or palliative care team prepares the family, the patient or family need not become upset. I typically explain to the patient or family in a non-accusatory and non-judgmental fashion that we are going to ask the county social worker to assist them. I tell them that their situation appears to be overwhelming, and that the county social worker may be able to provide them additional resources. Patients and families then welcome the APS worker when she arrives.
5. Most demented patients are not reliable about reporting mistreatment.
Recent research suggests that even demented patients may be able to reliably recount highly emotional events. Emotional memory is stored differently than cognitive memory. A patient may be able to recall highly emotional events even if they cannot remember mundane details, such as what they had for breakfast.
What, if anything, is the relationship between geriatrics and palliative medicine? They are clearly separate fields, each with their own distinct areas of competence and interests. There is though an area of overlap that holds the power to transform the way we care for patients with advanced illness. We saw a preview of this at the American Geriatrics Society annual meeting at Walt Disney World. Here are some highlights:
• Christine Ritchie gave a powerful talk at the fellowship director’s forum on bridging the divide between geriatrics and palliative care. She notes that collaboration makes sense in 2010 as unprecedented gains in life expectancy are leading to an exponential rise in the number of old frail patients with multiple chronic complex diseases. There is high symptom burden and care needs of these patents and their caregivers, and yet they are pitted against a fragmented health care system that is facing enormous financial pressures. Each field has areas of strength that the other can learn from, however this will require mutual respect and, per Dr. Ritchie, a clear recognition of the areas of non-overlap and distinctiveness.
• VJ Periyakoil’s pre-conference workshop on “Updates in Hospice and Palliative Medicine, was not only co-sponsored by AAHPM and AGS, but also used the GeriPal, a geriatrics and palliative care community [http://www.geripal.org/2010/05/need-your-expertise.html], to solicit input prior to her workshop. Are you sad that you missed it? Don’t worry – VJ will also be leading a similar collaborative pre-conference session at the upcoming AAHPM/HPNA meeting in Vancouver.
• Sandra Sanchez-Reilly and Jennifer Kappo led the palliative care SIG. Attendees received an overview of the where the two fields are collaborating from Greg Sachs. We also discussed new possible avenues for collaboration (combined fellowship anyone???)
• Jane Givens won the award for best scientific abstract in the ethics and health disparities section. Look for interesting new findings about the impact of antimicrobial treatment of pneumonia in nursing home patients with advanced dementia – is it associated with longer life? Are there tradeoffs in terms of quality of life? We’ll await the final paper
• Interesting findings from an MSTAR student at Mt. Sinai Tony Vullo suggesting two previously underappreciated barriers to hospice: (1) patients don’t want to give up their current home-care providers, with whom they have established relationships; and (2) patients would receive fewer hours of in-home support than they currently receive if they switch to hospice.
What were your highlights? Leave them as comments below.
by Alex Smith, MD and Eric Widera, MD