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GeriTech

In Search of Technology that Improves Geriatric Care

geriatrics

The ePrognosis App: On Life-Expectancy & Healthcare Decision-Making

December 13, 2013

[This post was first published on The Health Care Blog on 11/22/13.]

Last month an intriguing new decision support app launched, created by experts in geriatrics and palliative care. It’s meant to help with an important primary care issue: cancer screening in older adults.

Have you ever asked yourself, when considering cancer screening for an older adult, whether the likely harms outweigh the likely benefits?

Maybe you have, maybe you haven’t. The sentence above, after all, is a bit of wonky formulation for the following underlying questions:

  • How long is this person likely to live, given age and health situation?
  • Given this person’s prognosis, does cancer screening make sense?

The first question seems like one that could easily occur to a person — whether that be a patient, a family member, or a clinician – although I suspect it doesn’t occur to people perhaps as often as it should.

As for the second question, I’m not sure how often it pops up in people’s minds, although it’s certainly very important to consider, given what we now know about the frequent harms of cancer screening in the elderly, and usually less frequent benefits.

Furthermore, there is abundant evidence that “inappropriate” cancer screening remains common. “Inappropriate” meaning the screening of people who are so unwell and/or old that they’re unlikely to live long enough to benefit from screening.

For instance, one astounding study found that 25% of physicians said they’d order colon cancer screening for an 80 year old with inoperable lung cancer. So it’s clear that improving the decision-making around cancer screening would help improve healthcare safety, quality, and value.

Enter the ePrognosis Cancer Screening app, which is the first app created by the UCSF-based ePrognosis team. It’s free in the iTunes store, and according to co-creator Eric Widera, a geriatrician and colleague of mine, it was designed to be used by the public as well as by clinicians.

The app basically works like this:
  1. You tell it whether you’re interested in screening for breast cancer, colon cancer, or both.
  2. The app asks you 15 questions about yourself, your health, and whether or not certain activities are difficult for you. (The questions are a combination of the Lee and Schonberg mortality indices; see here for the questions and relevant scholarly citations.)
  3. You are then presented with a statement on whether cancer screening is recommended, along with a nifty speedometer graphic illustrating the balance of harms vs. benefits.
  4. If you click “Learn more” you are shown a series of pictographs illustrating information on expected harms and benefits of screening, along with information on what proportion of similar people will die over the next 10 years whether or not they get screened for cancer.
  5. You can also click share and reportedly send the report to another person. (Note: I wasn’t able to get this to work for me.)

For more information on the app, including some good screenshots, you can read theGeriPal post introducing the app.

Using prognosis: From research to ePrognosis to…app?

So will the app work as its creators hope? Meaning, will it help patients and clinicians make better decisions about cancer screening in older adults? And will it reduce inappropriate cancer screening in older adults?

Prognosis is, after all, a thorny topic. Even if you can get decent prognostic information at the time you need it, going through discussions and decision-making based on this information is not easy. For instance, this qualitative study of older adults found that although most participants were open to discussing life expectancy, about a third perceived such discussions as not useful, or even harmful. (Interestingly, 64% of participants felt that their physicians could not correctly estimate their life expectancy.)

The ePrognosis project itself was meant to address the first part of the challenge: the fact that practical prognostic information is hard for front-line clinicians – and regular people — to find. Consider this: even today, UpToDate has no topic page on how to estimate life expectancy in older adults, despite many guidelines now urging clinicians to factor prognosis into medical decisions. (For a useful slideshow on why we should use prognosis, see here.)

Instead, UpToDate has a page titled “Communication of Prognosis in Palliative Care”, authored by UCSF’s Alex Smith, a co-creator of ePrognosis. This resource has terrific content on how clinicians can discuss prognosis, but because of its title, may not be easily spotted by doctors searching for a quick way to figure out life expectancy. (“How to talk to patients about how long they’re likely to live” might catch more notice among generalists.)

I myself like the ePrognosis website in concept. That said, I recently found myself sheepishly admitting to Alex that I’ve hardly ever used it. Why? Mainly because my patients tend to be quite elderly and frail, and I feel that I’m already incorporating a sense of their limited life expectancy into my recommendations and conversations with them.

And herein lies the rub: the clinicians who think of using ePrognosis, or of incorporating life expectancy into their decision-making, are probably not the ones who most urgently need to use something like ePrognosis. (Not that we’re perfect – I’m sure using more decision support would help me — but at least we’re not the type to order cancer screening on an 80 year old with inoperable lung cancer.)

In general, the ePrognosis story illustrates a common challenge in improving healthcare quality: the problems that experts see at the population level (excess cancer screening in frail elders) are experienced very differently by the clinicians and patients on the ground (clinicians and patients have historically had enthusiasm for screening).

But changing the behavior of individuals – which is what you need to improve a quality problem – is very hard, especially if people remain embedded in their usual environments. Although expert guidelines and advice do have an important role to play, it’s usually not nearly enough to counter the habits and attitudes of the people in the trenches.

Still, when it comes to better healthcare for older adults, creating the tools to calculate and communicate life expectancy is a good start. Once a tool exists, it becomes possible to see how people respond to it, refine it, improve it, and also think of how to make it more available to the right people at the right time. One could even imagine certain tools being embedded into the clinic processes that nudge clinicians and patients towards (or away from) certain actions.

Now, where do you think we should go from here, if we want to use prognosis to improve healthcare, and healthcare value, for older adults? The creators of ePrognosis are looking for feedback and suggestions as to next steps. So check out the ePrognosis website, try out the app, and share some thoughts in the comments.

I just plugged information on a current elderly patient into the ePrognosis Gagne index and it predicts a 30% chance of death in the next year. Hm… perhaps I’ll reread that UpToDate page on discussing prognosis, as this patient is due for an advance care planning conversation. That page describes a five step process for discussing prognosis.

Should that be in an app?

[There are some interesting comments on this post at THCB; add your thoughts either here or there.]

Filed Under: Uncategorized Tagged With: aging, apps, geriatrics, mhealth

Aging 2.0: On Engaging Innovators & 11 Startups

December 3, 2013

[This post was first published on GeriPal on 11/25/13.]

If you are interested in the intersection between aging and innovation, these certainly are intriguing times.

Last Thursday I attended the kickoff event for Aging 2.0’s brand new GENerator program. This is “a new founders program that supports the most promising entrepreneurs working to enhance the lives of older adults and improve long-term care.” (Which I think means this is a business accelerator, but after only a year blogging about digital health innovations, I can’t promise to have mastered all the business lingo.) 
Despite the whopping size of the boomer market (see this terrific Bloomberg article on how business has so far struggled to tap it), this seems to be the first accelerator focused on serving the 50+ demographic.
I found myself impressed both by the growth of Aging 2.0 — an organization co-founded by a gerontologist only 18 months ago — and by the offerings of the eleven companies chosen. It’s encouraging to see the power of innovation and technology really focusing on the problems affecting older Americans, and those who serve them.
Of course, I also find myself with some reservations. I think of myself as a public-health geriatrician, and as such, my primary interest in these new innovations is less about whether there’s a good business market, and more about whether or not these offer good, practical solutions to the more important health and social problems affecting aging adults.
There is no question that entrepreneurs are great at innovation. But to succeed they also need to be great at selling their product. Businesses involved in healthcare or other socially-minded arenas always proclaim that they are doing good things for individuals and for society. Which sometimes is true but often it’s not quite as true as the business says it is, or as the business would like it to be. In the end, a startup must satisfy its investors. And an accelerator must satisfy its startups and investors.
So what does this mean for those of us professionals with expertise assessing social value and healthcare value? It means we should get in there and plan to constructively engage with two crucial groups. One group is the the innovators themselves, who will be interested in our expertise and feedback (although once they have a product at market they’ll probably be ambivalent when we raise concerns). 
The other group is the public to whom these products are being marketed. We can and should equip ourselves to help the public assess and understand the real health and social value (or at least, likely value) of these innovations that they are being invited to purchase. 
This public, needless to say, is quite a large group. It encompasses the 50+ demographic, as well as those offering services to this group, including long-term care and senior housing providers. And the sheer size and diversity of the 50+ age group is really something: the US Census data shows that in 2011, the 50+ population (civilian, non-institutionalized) was 98 million people. 
Of those people, many are family caregivers worried about an aging adult. Others are themselves in need of products and services to help cope with chronic illness, cognitive problems, or physical frailties. And of course, a large group of boomers is eager to maintain health and wellbeing for as long as possible. 

11 Startups chosen by Aging 2.0

For its inaugural GENerator program, Aging 2.0 chose eleven companies. I heard each give a short talk last week. Here are capsule summaries, based on what I heard, along with a few extra thoughts. 
  • BrainAid: smartphone or tablet app with patented software meant to help people compensate for executive dysfunction. Originally designed to help people with brain injury or stroke, the company believes its software can help people with early Alzheimer’s or other neurodegenerative cognitive impairment as well. Company has been working with the VA.
  • CareLinx: online marketplace allowing families to find, screen, hire, and pay in-home caregivers without going through an agency. (I wrote about CareLinx last year; still think it’s a promising idea although I have no idea how well it’s actually working out for the families and paid caregivers involved.)
  • CareSolver: a free online platform that provides customized tools to help family caregivers manage the needs of aging parents or other loved ones. This is right up my alley given my long interest in caregiver education, so I will probably try this soon. Of note, they apparently offer a Beer’s criteria med checker (something I’ve said we need in previous GeriTech posts).
  • Life2: predictive analytics company focusing on aging. From the short presentation provided, seems to me they might focus on helping LTC providers identify residents at increased risk, along with offering support in mitigating the risk. Suspect mitigating risk will end up being harder than identifying those at risk.
  • Lift Hero: “Medical Trips Made Easy,” says the website. Connects seniors who need rides with off-duty EMTs who provide door-through-door service to appointments. (Having seen elderly patients struggle to get to and from the curb, that “through” could be important.) This could be a very useful service although if the passengers are on average frail enough to benefit from EMT drivers, or have cognitive impairment, I certainly hope clinicians will have a way to connect with the care circle regarding the visit. (Often the person accompanying the older patient is instrumental in providing extra history, or in helping relay instructions to the care circle.)
  • Lively: Activity sensors for the home combined with printed LivelyGram that sends the senior pictures and news twice a month. I wrote a bit about Lively and activity sensors last May, and am glad to see that it’s possible to  attach an activity sensor attach to a pillbox. (Extremely helpful to clinicians to know if a person is or isn’t taking their medications!)
  • MyGrove: This one flummoxed me a bit so I’ll just quote the blurb passed out at the event: “a multimedia marketplace and social engagement platform tailored for Active Adults and their communities.” If you, like me, aren’t sure what an Active Adult is, it’s apparently a term used to refer to people aged 55+. (What to call Active Adults when age and illness render them less active? I don’t know.) Whatever this product is, it sounds like they are targeting the “young old” who aren’t yet close to needing geriatric expertise.
  • OpenPlacement: platform designed to help seniors, families, and discharge planners find and choose among rehab or residential placements more easily. I assume this is modeled on OpenTable, although obviously placing seniors is more complicated than making a restaurant reservation. Should be helpful to families and discharge planners facing transitions in care, since right now families often find it’s a nightmare to figure out who accepts their insurance, has beds available, offers certain features, etc.
  • Sabi: Per Google, the “pill box and walking cane company.” Per Sabi, a creator of products that improve day-to-day life with “superior functionality and design.” The website reminds me of the dilemma many companies face: how to sell products to older adults without reminding them that they are older? Still, the products really are attractive and look quite functional too.
  • Tapestry: App for web and mobile which simplifies social media for older adults. Meant to help families stay connected, by creating an easy interface for seniors to view Facebook photos, email, photos, etc. Currently has a free basic plan or for $5/month offers unlimited messages and photo storage. In general I think this kind of service will ultimately very useful to many older adults. Almost every older person loves to get messages and pictures from family, but navigating a standard tablet can be overwhelming to some, either because they are not tech-savvy or because they are cognitively impaired.
  • True Link: A caregiver-managed debit card allowing personalized spending controls and with fraud-protection features. The founder said that every year seniors lose $52 billion to scams and fraud (!); True Link is meant to offer vulnerable seniors a way to spend without putting themselves at excess financial risk. Caregivers can block spending on certain merchants or types of merchants (i.e. sweepstakes.) I could see this being a great option for seniors with cognitive impairment, and wonder if it will be of interest to financial trustees and fiduciaries. For families, the hard part will be bringing up their concerns re finances to an older loved one; proposing this option likely will be dicey. 
So there you have it: eleven ideas meant to make life better for older adults and their caregivers. Will they take off? Will people use them? Will people like them? (And how will we know if people like them? Hopefully users will have some way of posting reviews.)
Last but not least, will these improve outcomes in terms of wellbeing, function, avoiding morbidity, and reduction of caregiver stress?
We should find out the answers to at least a few of these questions over the next year or two.

And we should think about giving the innovators, as well as the public, constructive feedback on these products. They surely aren’t perfect, but they are a step in the right direction and most of them are trying to meet real needs of aging Americans.

In the meantime, if you’re a clinician or work on healthcare for older adults, which of these ideas do you find most promising?

[Disclosure: I have no financial ties to any of these companies, or to Aging 2.0.]

Filed Under: Uncategorized Tagged With: business, geriatrics, innovation

Two Must-reads from JAMA’s Critical Issues in US Healthcare

November 13, 2013

This week’s JAMA issue is titled “Critical Issues in US Healthcare” and wow, it is a goldmine of good reading for those interested in the state of healthcare today.

So far I’ve read two particularly outstanding articles that I want to recommend. (If you don’t have personal or institutional access to JAMA, apparently you can access JAMA “free for a limited time” by signing up for their JAMA Network Reader.) They are “Reliable and Sustainable Comprehensive Care for Frail Elderly People,” by geriatrician Joanne Lynn, and “The Anatomy of Healthcare in the United States,” by Dr. Hamilton Moses et al.

“Reliable and Sustainable Comprehensive Care for Frail Elderly People.” 

In this article, Dr. Lynn begins by describing some sobering realities:

“As the incidence of sudden and premature deaths has declined in the United States, the last part of most individuals’ lives has come to be marked by progressive chronic illnesses and diminishing physical reserves that engender self-care disabilities and frailty. Those who live past age 65 years now average 3 years of self-care disability at the end of life, needing long-term services and supports (LTSS). For those living past 85 years old, nearly half will have serious cognitive decline.”

The problem, as Dr. Lynn points out, is that our fragmented, specialty-driven, acute-care-focused healthcare system is poorly set up to help people during this phase of life, during which frail elders need comprehensive coordinated care that helps them maintain function and quality of life. Furthermore, much of what people need in the last phase of life is not covered by Medicare, e.g. supportive services that help older adults with their living needs.

Instead, Dr. Lynn notes that these needs have been treated as something that individuals should save for, and that families should step up to address. But this is a huge burden for people and families to shoulder, and will be even harder to maintain as the population skews older over the next few decades. (The ratio of working people to dependent and disabled older adults, which was 5:1 in 2011, is expected to  decline to 3:1 by 2029.)

Fortunately, Dr. Lynn has some solutions for us to collectively consider. She begins by urging society to recognize that “frail elderly people have different priorities and needs than they had earlier in life, and their care system must reflect those priorities.” She notes that discussions about living with frailty are largely absent from popular media and public conversation, and calls for “vigorous discussion about how people live well with frailty and how best to die.”

She then goes on to advocate for a number of sensible changes, including individualized medical planning, multidisciplinary assessment and management, new metrics of healthcare quality for this population, and redesign of healthcare delivery models.

Most importantly, she advocates for healthcare services and long-term services and supports to be considered equally important, and ideally integrated:

“A balanced system would give integrated multidisciplinary teams the tools and authority to match services with each frail person’s priority needs. Food, housing, transportation, and direct personal services are often more important than diabetes management or chemotherapy. Elderly people and their families often choose comfort, function, and familiar environments and relationships over small chances for cure or longer survival. Medicare’s open-ended entitlement to medical interventions contrasts with the limited and often inadequate safety-net programs to support personal needs, and this mismatch complicates development of a coherent and efficient service delivery system.”

The issue, of course, would be how to fund and finance such a program. Dr. Lynn doesn’t go into great detail in this article (her prior work has addressed this in the past), although she mentions the possibility of a “MediCaring” ACO taking this on. She also notes that we currently have some models, such as PACE (Program of All-Inclusive Care for the Elderly) and the VA’s Home-Based Primary Care, that we might learn from.

Obviously, this article doesn’t have all the answers for those of us who want better care for an aging America. Still, I like the way Dr. Lynn frames the needs that people have during this last fragile stage of life, and her description of how our current system is really a terrible match. I also agree that we need to have more conversations about those last frail years that many people will undergo.

Will we soon be moving towards a system of integrated healthcare and long-term care for frailer elders? Only if the public demands it, I think…which hopefully they will.

“The Anatomy of Healthcare in the United States“

This is a much longer article, combining very interesting summaries of healthcare data with thoughtful reporting on core trends in healthcare, and insightful commentary on some of the thorny tensions that really might rip the healthcare system apart if we don’t find ways to resolve them.

The juiciest data items are summarized in the abstract:

“The findings from this analysis contradict several common assumptions. Since 2000, (1) price (especially of hospital charges [+4.2%/y], professional services [3.6%/y], drugs and devices [+4.0%/y], and administrative costs [+5.6%/y]), not demand for services or aging of the population, produced 91% of cost increases; (2) personal out-of-pocket spending on insurance premiums and co-payments have declined from 23% to 11%; and (3) chronic illnesses account for 84% of costs overall among the entire population, not only of the elderly.”

In short, we healthcare providers have been charging more and more, and administrative costs have been going up. Out-of-pocket spending stinks for patients but so far apparently hasn’t been rocketing up in the same way.

And surprise surprise, chronic illnesses are driving most of the cost. (Cue the crowd that loves to promote prevention as the main way we should manage the chronic disease.) To my surprise, this analysis found that 67% of the costs of chronic illness are in people younger than 65, but still, I expect that management of chronic disease will be very important to Medicare over the next 10-20 years.

My next favorite part is also nicely summarized in the abstract:

“Three factors have produced the most change: (1) consolidation, with fewer general hospitals and more single-specialty hospitals and physician groups, producing financial concentration in health systems, insurers, pharmacies, and benefit managers; (2) information technology, in which investment has occurred but value is elusive; and (3) the patient as consumer, whereby influence is sought outside traditional channels, using social media, informal networks, new public sources of information, and self-management software.” [Emphasis mine.]

And then there’s the highlighting of problematic tensions currently affecting healthcare. I will again quote the abstract:

“These forces create tension among patient aims for choice, personal care, and attention; physician aims for professionalism and autonomy; and public and private payer aims for aggregate economic value across large populations. Measurements of cost and outcome (applied to groups) are supplanting individuals’ preferences. Clinicians increasingly are expected to substitute social and economic goals for the needs of a single patient. These contradictory forces are difficult to reconcile, creating risk of growing instability and political tensions. A national conversation, guided by the best data and information, aimed at explicit understanding of choices, tradeoffs, and expectations, using broader definitions of health and value, is needed.”

Wow. It really is not often that I come across an article that clearly calls out several big problems and how they are intertwined. (Most articles just hack at one specific part of the problem…kind of the way specialists hack at one specific organ while no one summarizes the key overall problems for the patient.)

The article itself is long and a bit wonky, but overall much more readable than many health policy articles. There’s a very good section summarizing the changing role of patients and consumers in healthcare, and also an interesting section referring to direct-pay and “concierge” medicine.

Regarding team-based care and reallocating healthcare work among professionals, the authors make the following observation:

“…given the shift in orientation to measurement of success with populations rather than individuals, there is a struggle between efforts to manage professionals systematically and efficiently and traditional structures that reflect preference for autonomy, hierarchy, and historically based professional values. These factors, along with increasing patient assertiveness, create the primary management challenge of this era.” [Emphasis mine.]

So true, and what we are going to do about it I really don’t know. In general the strength of this article is in describing the situation and some very important conflicting forces that are keeping healthcare mired in dysfunction; solutions are obviously another (much more difficult) story.

I especially enjoyed the description of an “iron triangle” of conflicting forces:

  • Patient expectations for individual care and personal attention; 
  • Physician autonomy; 
  • Value as defined by policy makers using health status of large groups and aggregate measures of cost.
This is really one of those articles that I will have to reread and highlight more extensively. 
Whew. We have our work cut out for us during these next 10-20 years in an evolving healthcare system. 

Filed Under: Uncategorized Tagged With: care coordination, chronic diseases, geriatrics

Digital Infrastructure for Medicare Primary Care: the Oak Street Health Story

November 1, 2013

[Today’s guest post is by Dr. Griffin Myers, whose innovative primary care clinic for Medicare patients, Oak Street Health, opened its doors in September 2013.]

Welcome back; this is the second in a series of guest posts I’ve been invited to write for GeriTech. As mentioned in my previous post, one nice way to think about our model of primary care for Medicare beneficiaries at Oak Street Health is using the list of recommendations put forth in the Institute of Medicine report “Best Care at Lower Cost.”

This post is about the first recommendation, which falls into what the report groups into the category of “Foundational Elements.” Ironically we’ve found these to be the hardest objectives thus far. We’re still in a bit of flux as we get settled into our new setup, but I’ll give an introduction.

“Recommendation 1: The digital infrastructure. Improve the capacity to capture clinical, care delivery process, and financial data for better care, system improvement, and the generation of new knowledge.”

This immediately brings to mind a super-EHR: one product for charting, practice management, financials, claims, population health, and clinical decision support.

But, surprise: there is no off-the-shelf product that integrates all of this for primary care, never mind primary care for seniors. At least not that we’ve found after an extensive search. There are products for each of those functions, but not a single package. And asking providers to use multiple non-integrated products isn’t a real solution. Here’s our approach.

How we chose an EHR & practice management system [Read more…] about Digital Infrastructure for Medicare Primary Care: the Oak Street Health Story

Filed Under: challenges in providing care Tagged With: care coordination, EHRs, EMRs, geriatrics, medicare, oak street health, oakstreethealth, tech for clinicians

Getting to Better End-of-Life Care for Older Adults

October 25, 2013

[This post was first published on my Geriatrics for Caregivers Blog on 10/24/13. Am reposting here as I think the topic is relevant to the GeriTech audience.]

What is good care at the end-of-life, and how can we do better as a society?

This is the question that the Institute of Medicine (IOM) is now studying, and they have created a “Committee on Approaching Death: Addressing Key End-of-Life Issues.”

As part of their research into the current state of end-of-life care, the IOM is inviting the public to send them comments via this online comments page. (Comments must be submitted by November 1st, 2013.)

In particular, the IOM wants to hear about the following topics:

  • Barriers to and opportunities for improving care for individuals and their families,
  • Patient and family experiences with care, and
  • Health care provider experiences.

Now, as you can imagine, addressing end-of-life issues is a big part of what we do in geriatrics. Furthermore, I’m thrilled to see the IOM addressing this issue, since their reports are highly respected and often end up influencing policy and funding.

So I was very glad to provide some comments to the IOM, and encourage others — family caregivers, geriatric care managers, clinicians, or really anyone who has had personal experiences with end-of-life situations in the US — to submit comments as well.

The best reports, after all, result from the academics’ expert opinions being informed by the experiences of those of us in the trenches, trying to navigate real end-of-life situations.

My comments on Better End-of-Life Care for Older Adults

Below, I share the comments that I’m submitting in response to the IOM’s questions.

Question 3: If you are a health care professional, please tell us about your experiences in providing care to individuals with serious progressive illness or condition and their families. What are the problems, opportunities, challenges, and successes you encounter? Does the term “end of life” impact the willingness of the individuals you work with to engage in the provision of care or the willingness to receive it? Please indicate what type of professional you are (discipline/specialty).

I’m a geriatrician and general internist; I used to work in a federally qualified health center but now I have a small consultative practice, which complements existing primary care. I have special interests in educating family caregivers, and in leveraging technology and online resources to improve geriatric care.

Problems with end-of-life care:

  • People often haven’t reflected on, and then planned for, how they’d prefer to die.
  • Just importantly, they haven’t planned for the type of medical care they want in their last years of life.
    • Specifically, people don’t think of how they’d prefer to orient medical care during those last years when they may be steadily declining due to dementia or other chronic illnesses and frailty.
  • Patients and families often don’t realize it when a chronically ill person is likely in the last few years of life.
    • This is partly because clinicians often don’t discuss prognosis and when death might happen. And patients tend to not ask, unless they’ve been diagnosed with cancer.
  • Helping patients and families understand that they are probably in the last years of life is often quite hard.
    • For clinicians, it takes time, it takes good communication skills, and it takes a willingness to engage in an emotionally charged conversation.
    • Most primary care clinicians are lacking the time and training to have these conversations.
  • My personal experience is that as a doctor it’s been easier to discuss prognosis and end-of-life planning when working on a hospital-based palliative care consult service than in a primary care setting.
    • Because palliative care consults tend to happen in the context of an acute health crisis, I think this helps everyone focus on a difficult topic.
    • In the outpatient setting, there is a lot of pressure to postpone awkward topics. Plus it’s very hard to find the time to open the can of worms and deal with it compassionately.
  • Elderly patients often have their care divided between many specialists, each very focused on his or her diseases of interest, and they tend to want to do everything possible for those disease.
    • Primary care doctors struggle to integrate the care.
    • We have no good methods for helping patients and doctors figure out when to start shifting the goals of medical care, other than signing patients up for hospice, which tends to happen very late in the game, if at all.
  • We under-use palliative care, both for symptom management and for thoughtful discussion of goals for medical care.
    • Many people – patients, caregiver, clinicians – think that it’s just for the very end-of-life, and don’t realize that it’s an approach that can be pursued without “giving up” or signing up for hospice.
    • I’ve often witnessed families turn down palliative care, even though they would’ve likely found it beneficial. Suspect this is boils down to communication issues.
    • Other families who would like palliative care services find themselves unable to access them, especially in the outpatient setting.

Opportunities:

  • I like the POLST paradigm and find using POLST helpful, esp as a framework to guide a conversation about what kind of care a patient wants when future health crises occur. It shouldn’t be the beginning and end of advance care planning, but it’s a helpful tool.
  • We now have easy-to-use online tools to help individuals and families reflect on preferences for care in the last stages of life. I like PrepareForYourCare.org, and also TheConversationProject.org.

Question 4: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?

The biggest barrier to better end-of-life care for older adults — or those suffering from serious progressive illnesses — is that our current paradigm for end-of-life care is best suited to supporting people as they die of something relatively predictable, like advanced cancer.

We don’t have a wide-spread approach to help older people – and their families — through their last few years of decline. (This stage — in which living, declining, and dying overlap — is very compellingly described in Katy Butler’s recently published book, Knocking on Heaven’s Door. )

Incidentally, this is the geriatric approach, but right now it’s treated as an art practiced by only a small number of clinicians, rather than a broader approach around which to organize care services for millions of aging adults.

Other barriers to better end-of-life care:

  • Primary care clinicians don’t have the time and training to discuss planning for last stages of life with patients and families.
  • Older adults find their care split between multiple specialists.Primary care clinicians often are not able to help patients and families coordinate care and navigate through the last stages of life.
  • Palliative care services remain largely based in hospitals, and are hard to access in outpatient setting.
  • The conversations needed to help patients and caregivers plan for the last stages of life are poorly reimbursed.
  • Society generally favors medicine having a role in saving lives and extending lives, rather than medicine helping people prepare for and cope with physical decline, and eventually death.
  • Intensive medical services (hospitalizations, diagnostic tests, specialty consults) are easy to get. Services to support elders and caregivers at home, or to help them manage chronic illnesses at home, much harder to get, even though these services are especially important during the last stages of life.

Question 5: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?


Three key changes to improve end-of-life care for older adults:
  • We should broaden end-of-life to mean the last years of life, and we should develop a healthcare pathway for chronically ill and declining people who are likely in their last years of life, as is described in this “MediCaring” white paper by Dr. Joanne Lynn.
    • Of note, the UK has developed a Gold Standards Framework along similar lines; we should study their approach and try to learn from their work.
  • We should provide primary care clinics with the time, training, and tools to help patients and families engage in meaningful planning for the last stages of life.
    • This is especially important for those primary care clinics that serve older adults, as navigating the last stages of life becomes relevant for just about every older person.
  • We should plan end-of-life services differently for children and younger adults than we do for the larger population of (mainly older) people who are likely to experience decline and dependence before dying.
    • Although these populations have some overlaps in their end-of-life needs, we’ll do a better job figuring out how to meet their needs if we consider them separately.

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Decline, death, and dying will always be challenging for people and their families, as well as for the clinicians who serve them. Still, today in the US it often ends up being much more difficult and distressing than it has to be.

If you’ve had personal experiences with end-of-life situations, I hope you’ll share your stories and ideas with the Institute of Medicine. Remember, comments must be submitted by November 1st.

Filed Under: Uncategorized Tagged With: aging, chronic diseases, end-of-life, geriatrics

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