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What A Caregiver Said Was Hard About Hospice

[November is National Family Caregivers Month. In this post, I share the eye-opening letter I received from a Geriatrics for Caregivers reader who has cared for his mother — now 100 years old — in his own home for 3 years. She is now on hospice. 


The writer has given me permission to share this letter, noting that his mother, a former teacher, would have been glad to know people were learning from her story. Please note: all emphasis below was added by me.]

Howdy Dr. Leslie –
Mom has progressed quite a ways down the road and actually I am quite amazed that she is still with us. I think that, somewhere in the back of her head, she had the 100th birthday in her mind as a goal. She has deteriorated quite a bit in the last 10 days since her birthday.

Two months ago we placed mom on the local hospice program (we have one, run by the hospital) and we were just recertified for another 60 days. You may remember the difficulties our hospital was having and the possibility that it might actually close due to some incredibly bad CEO’s and bad management. Fortunately, they have located a fellow who used to be the CEO here about 15 years ago and he has gone on to form his own hospital management company and they have several hospitals located around the country. Things appear to be on a new track.

Now to your question – the thing that has probably frustrated me the most in caring for my mother are two:

  1. the lack of resources and available training to function as a caregiver and
  2. the continuing lack of resources that I have received from our hospice program. 

As mom progressed, I had located several dementia units that I felt would be a good match and found that unfortunately 3 of them have discontinued their dementia care units due to rising liability issues. The remaining ones didn’t make me feel comfortable.

Since mom has been unable to walk back in February, I have had one night off and I know it is beginning to affect me. I have found caregivers (including my sister when she is able to come up) but none will stay overnight and none will do any lifting. Even the hospice program offers volunteer caregivers but only for about a two hour time period and they do not do lifting. We tell caregivers to watch out for their health, but then don’t provide the resources to accomplish that.

A local nursing home now offers respite care and our hospital has once again started accepting Medicare and Medicaid patients for respite care up to 5 days. (Prior to this, the other CEO refused to accept anyone except self pay for respite care).

Much of what hospice offered I didn’t need: harp player, chaplain, social worker, respite volunteer (although I have utilized her 3 times when I haven’t had a choice). What I have taken advantage of is a personal care individual who washes mom’s hair and trims/cleans her fingernails as my eyesight made this difficult), a physical therapist to see if mom could improve her ability to stand on her own as an assistance to me when I was changing her and of course, the nurse. All of them, with the exception of the physical therapist seemed to come with their own agenda of what they wanted for mom’s care – despite my stating and restating what I wanted done.

The PT was cut after the first 60 days. Hospice offered things such as pull-ups, latex gloves and a pharmacy program from somewhere in Pennsylvania – all of which I have taken care of already. I try to maintain a routine for mom’s sake and they seemed to want to constantly change the routine both with their actions and constantly changing scheduling of visits. I had also thought that the hospice would provide more help in securing respite care and possible assisted living assistance such as help with requirements and paperwork, but found I knew more than they did. 
They just recently received a renewal of their gold star accreditation. The hospice nurse tried to change some of mom’s medication and ordered new ones despite the fact that her primary care doctor had just recently reviewed mom’s medication and was satisfied with what she was taking. The nurse even tried to convince him to prescribe morphine (just to have on hand in case . . . ) which he refused to do. Her hospice doctor even tried to override the primary care doctor on the morphine but eventually backed off. Both the hospice, hospital and clinic are under the same company.

The head nurse and I have had multiple discussions about their program, but I’m still not comfortable with it.

I have so far decided to keep the hospice for one main reason – I think it will make it easier to get mom into the hospital’s respite care if I should get sick or need help due to an accident in a hurry.

It was my feeling that the health care system should be of assistance to me and yet I have found them to unable to do so and in a few cases, an actual obstacle. I understand that some of this may be due to being in a low income rural area, but I have spoken with others who have experienced similar problems with the health care system and hospice programs even in larger cities.

Hope that helps a little. The good thing is that it has pushed me towards trying to make things better for other families once my commitment with mom is completed. 

[A RAND study recently valued the care provided by family caregivers to the elderly at $522 billion per year. This letter shows us what some of that care actually entails. This Thanksgiving, don’t forget to thank the family caregivers you encounter. They are doing amazing work and we don’t thank them — and support them — nearly enough.]

What Caregivers Say is Hardest About Helping Aging Parents, and Atul Gawande’s Insights in Being Mortal

Several weeks ago, I asked my caregiving audience at Geriatrics for Caregivers a question:

“What’s your biggest frustration with helping aging parents, or aging loved ones?”

The answers were enlightening. Nobody, unsurprisingly, said avoiding delirium, or minimizing medication side-effects, or any of the other very important things we talk about in geriatrics.

Instead, the biggest frustrations overwhelming had to do with managing relationships, and finding ways to provide help and support, while respecting the older person’s desire for autonomy and independence.

(Want to see just what people said is hard? I highly recommend you read their quotes here.)

So, I had a real “Aha!” moment when I read Atul Gawande’s new book, “Being Mortal,” shortly after hearing from the Geriatrics for Caregivers readers.
It turns out that “Being Mortal” is mostly about getting old, and about caring for those who are getting old. 
In other words, he has brought his signature style to the topics of aging, and caregiving.
But you could easily not know this if you’ve mainly read the press about the book. The media has mainly focused on this book being about “end of life,” and Gawande himself chose to highlight a cancer-and-the-magic-of-hospice story in his widely read New York Times op-ed. 
He also, when I saw him speak in San Francisco last month, chose to deliver his prepared remarks on the same topic: the better cancer death of his daughter’s piano teacher.
This struck me as a shame. Although as a society we certainly need to have more conversations about how we die, and how to make it better, we really need to have more conversations about aging, declines in independence, and caregiving.
(Full disclosure: My father died of cancer at age 61, while I was in medical school, and we certainly could have used more palliative care involvement. Rest assured that I consider terminal cancer a devastating experience well worth any and all improvement efforts. But I still think cancer and death are hogging the limelight.)

As far as I can tell, people would rather plan to die than plan to be old and slowly declining.

And I am pretty sure that right now people would rather train in palliative care than in geriatrics.

So. We need people to champion and spearhead a thoughtful discussion about what’s hard about helping older people, especially when they become frail and start to need more assistance. 
And we need good, compelling, readable books that can help people reframe how they might offer help to an aging parent, and what kinds of goals to strive for during those last years. 
I personally think Being Mortal is one of those books: a compelling read that could give families throughout the country some really valuable insights on how to help aging relatives during the last few years.

But in the end it will come down to what the family caregivers think, not me.

(I’ve already had one person tell me she thinks it’s “good for doctors.” Which it surely is, but I’m especially eager to find books that are good for families.)
At some point, I’d like to write a more in-depth summary of the many insights Being Mortal offers, when it comes to helping people manage aging and declines in independence. But as I’m not sure when I’ll have time to write it, I offer you instead a substitute: my tweets from Atul Gawande’s talk at the Commonwealth Club last month.
If you’ve read Being Mortal: what did you think of its insights on aging and caregiving?
[View the story “Atul Gawande Talks About Being Mortal” on Storify]

Props to RWJF for Improving #CultureofHealth, & the power of social media

In my last post, I explained why I felt that #CultureofHealth wasn’t quite working for me, and I proposed that we try to brainstorm complementary memes.

In particular, I was concerned that an intense focus on “being healthy and staying healthy” might not offer enough support to those who struggle with illness, or to clinicians whose work it is to care for “sick people.”

The CEO of the Robert Wood Johnson Foundation, Dr. Risa Lavizzo-Mourey, was kind enough to write a response on THCB, and several people commented on both posts.
Furthermore, on October 17th, Dr. Lavizzo-Mourey posted a comment announcing that RWJF had made some tweaks to their message, to better clarify that a Culture of Health includes everyone, “be they sick or well.”
I am, of course, hugely grateful to RWJF for taking the time to thoughtfully consider the issue. 
I’m also especially grateful to those who took the time to comment and relay their own reactions to RWJF’s previous definition of a Culture of Health; I’m sure this input was vital to the process of considering the Culture of Health messaging.
In this post, I want to share the “tweaks” so far in defining the Culture of Health. I’ll also share some of the complementary meme ideas I heard from other people this month. And then I’ll close with some thoughts on the power of blogging and social media.

Culture of Health before and after

“We believe an American Culture of Health is one in which:

  1. Good health flourishes across geographic, demographic and social sectors.
  2. Being healthy and staying healthy is valued by our entire society.
  3. Individuals and families have the means and the opportunity to make choices that lead to healthy lifestyles.
  4. Business, government, individuals, and organizations work together to foster healthy communities and lifestyles.
  5. Everyone has access to affordable, quality health care.
  6. No one is excluded.
  7. Health care is efficient and equitable.
  8. The economy is less burdened by excessive and unwarranted health care spending.
  9. The health of the population guides public and private decision-making.
  10. Americans understand that we are all in this together.”
As I said, other people’s comments provided truly vital input to the conversation. I especially want to highlight Dr. Peter Elias, a remarkably thoughtful primary care physician who I know through the Society of Participatory Medicine. He commented:

“[This] talks about being and staying healthy, but doesn’t speak to the people who are ill and struggle for even some improvement in health, let alone those who just want dignity and comfort because health is no longer an option for them. 

I think I understand the intent: a society that values the things that foster health. But the message I hear (and my patient heard) is that health is not just the goal, but the only acceptable state. That’s pretty hard on the ill. It lends itself to a culture of blaming patients for their misfortunes, something I see on a regular basis. 

How does a dying patient related to a culture of health? Probably by feeling alienated, disrespected and disposable. How will clinicians behave in a medical culture of health? Will they be unwilling to care for patients who cannot become healthy or do not try hard enough (by someone’s definition) to get healthy? 

I fear that a culture of health would make it less acceptable to care about those who are not healthy.”

Again, it is a HUGE credit to Dr. Lavizzo-Mourey and RWJF that they really took these comments under consideration. They could have ignored me and Dr. Elias and kept doing what they do, and we all still would have mostly kept loving them because their foundation plays a vital role in improving health and health care.
But instead, RWJF made some modifications. And here’s how they are now defining a Culture of Health:

We believe an American Culture of Health is one in which:

  1. Good health flourishes across geographic, demographic and social sectors.
  2. Attaining the best health possible is valued by our entire society.
  3. Individuals and families have the means and the opportunity to make choices that lead to the healthiest lives possible.
  4. Business, government, individuals, and organizations work together to foster healthy communities and lifestyles.
  5. Everyone has access to affordable, quality health care because it is essential to maintain, or reclaim, health.
  6. No one is excluded.
  7. Health care is efficient and equitable.
  8. The economy is less burdened by excessive and unwarranted health care spending.
  9. The health of the population guides public and private decision-making.
  10. Americans understand that we are all in this together.

This, in my mind, is a big improvement.

Now, having just read Atul Gawande’s new book (which is mostly about supporting the well-being of aging adults during their last years of vulnerability, even though it is being hyped as an “end of life” book), I am very much thinking about how do we make sure the healthcare system offers older adults more of the right care and less of the wrong care.

And I can’t say that the points above — or the Culture of Health mantra for that matter — provide a lot of guidance. Instead, I’m feeling much more inspired by the Lown Institute, who recently emailed me the following statement:

“We are assembling a national network of impassioned medical students, residents, senior clinicians, patients and community groups who have joined us in building the RightCare Alliance, a movement dedicated to ensuring that human presence is central to scientific ministrations. Members of the RightCare Alliance are creating programs for transforming medicine, by addressing issues of overuse and underuse of our existing healthcare system and working to ensure that the heart of medicine is preserved over the business of healthcare.”

(Sign me up!)

In truth, the scope of what health, health care, and healthcare cover is likely too big to be adequately represented by any one meme, or even 10 point bullet list.

There is addressing upstream health factors, there is getting people to adopt healthy behaviors, there is the patient-healthcare system interaction when someone relatively healthy comes in with an acute problem, there is the the hard work of helping people manage their chronic illness for decades, and then there is my favorite work: helping aging adults with multiple medical problems make the most of their health and their situation. (Plus there are hospitalizations, surgeries, rare diseases, and even the possibility that much of how sick or old we feel is being driven by our mental attitudes.)

At this time, as best I can tell, RWJF is not focusing on either aging or the optimal primary care of aging adults with multimorbidity.

That’s ok. We all have our piece of health care (and healthcare, which I define as the professional services often covered by insurance) that we are going to work on.

We just may need to be more clear in the future, in specifying which part of health care we are talking about, in order to focus on the right memes and priorities.

Complementary meme ideas

Several people endorsed “Culture of Care,” but here are some others that came up during the #CultureofHealth conversation:
  • “Care can be complicated, but then so can people”
  • How about: “Wellness didn’t work out…now what?” or “Prevention: the things you do before you get sick.”
  • #cultureofcare also communicates more partnership opportunity, IMO.
  • “Collaborative Team”
  • #Cultureoflove
  • #CultureofCaring
I myself brainstormed several in the comments thread (which no one really responded to but I’ll share them here anyway):

  • Culture of Caring & Better Health
  • Culture of Optimizing Health & Wellbeing
  • Culture of Comprehensive Health Care
  • #CultureofBetterHealth
  • #BetterHealthBetterCare
  • #CultureofHealth&Care
If you particularly like any of the above, I hope you’ll speak up in the comments below.

In closing: the power of social media

Obviously, this whole affair is a testament to the power of social media and the public conversations it enables. 
Before the blogging era, a small fry such as yours truly could never have had her opinion heard by the leadership of a big foundation. Blogging and social media also make it easy for others to add their opinion. 
After all, a blogger’s work matters the most when it 
  • Gives voice to what many others were thinking, but didn’t have the time or capacity to say prominently.
  • Sparks constructive conversations among a group that might not otherwise be talking to each other.
It also helps to have a bigger blog give you a microphone, and I’m indebted to Matthew Holt and John Irvine of The Health Care Blog for enabling me to share my thoughts with a much bigger audience than I’d ever reach on my own.
The morals of the story: 
You can’t make change alone. 
Conversations are important. 
Social media facilitates those conversations, and can allow small players to be heard by big players. 
It is hard to capture everything we want in health care with a single meme.
Comment. Tweet. Blog. Make change.

Why We Need a Complement to #CultureofHealth

[This post was very recently published on THCB and RWJF’s president has already posted a response. Esp if you are involved in the care of older adults or people who are medically complex, please consider posting a comment at THCB. Memes can be very influential, especially when they are promoted by major organizations. I hope you’ll weigh in on the conversation!]
Last week, I attended the Fall Annual Health 2.0 conference. There was, as usual, much talk of health, total health, and of extending healthy years. 

And this year, there was a special emphasis on promoting a “Culture of Health,” a meme that has become a centerpiece of the Robert Wood Johnson Foundation’s work.

So much so, that when I approached a conference speaker, to briefly comment on my interest in helping beleaguered family caregivers with their carees’ health and healthcare issues, I was advised to work on promoting a culture of health.

Hm. Funny, but as a generalist and geriatrician who focuses on the primary care of older adults with multiple medical problems, I’d been thinking more along the lines of:

  • Promoting the wellbeing of older adults and their caregivers.
  • Optimizing the health – and healthcare — of my aging patients.
In other words, I’d been thinking of a “Culture of Care.”

As in: “I care about how you are doing, and I will provide care to help you with your health.”

Since all my patients have multiple medical conditions, that care means finding ways to help them with their many health concerns. These include diseases, such as diabetes, COPD, heart failure, and Alzheimer’s, as well as “problems,” such as pain, falls, depressed mood, and worrying about whether some recent snafus are a sign of dementia.

It even includes issues like tense relations with anxious children who think Mom should move to assisted living; a common “relationship issue” that inevitably tracks back to the present and future state of Mom’s underlying health problems.

My work, as a doctor, is to collaborate with my patients in order to minimize symptoms, maximize function, improve wellbeing, and prevent health complications. All of which, if I do it well, generally ends up helping their family caregivers.

Is promoting a #CultureofHealth the same as promoting a #CultureofCare? As a front-line clinician, they feel very different to me.

Namely, one strikes me as about working way upstream to prevent health problems before they happen. (“We shouldn’t need a sick care system!”)

And the other is about responding to people who are suffering, and need our help to feel better. No, this is not the hallowed work of preventing chronic diseases from emerging. But it is preventing – or at least delaying — further deteriorations in health and function. It is helping people make the best out of the situation they are now in.

If you are working with people who are already downstream, and are coping with the burdens of chronic illness, should your priority be #CultureofHealth? Or #CultureofCare?

Consider, for instance, the family described in Knocking on Heaven’s Door. If Katy Butler’s parents, struggling with cognitive impairment and progressive decline in the aftermath of a stroke – and this after a lifetime of “healthy living” – ask their primary care doctor for help, is he more likely to offer the right assistance by thinking “Promote Culture of Health”? Or “Promote Culture of Care”?

After all, one way leaders can test a guiding principle is to ask themselves: as people in my organization face their work challenges, will this help them know how to do it right, or better?

I don’t think #CultureofHealth helps me do my work better. Instead, it leaves me wondering how on earth I’m going to get help doing my work.

This is not to say, mind you, that I don’t have great respect and appreciation for the work and ideas of the Robert Wood Johnson Foundation. If you’re someone like me, who went to medical school planning to work on improving primary care, you can’t not love RWJF. (Nor can you avoid hoping that they’ll someday find you worthy of funding.)

Furthermore, as someone with a MPH degree, an interest in systems, a background in quality improvement, a focus on person-centered care, and unqualified admiration for Alex Drane’s work highlighting the Unmentionables that affect people’s lives, I absolutely believe in what RWJF is championing.

That is to say: I believe that we as a society must address the social determinants of health, help people feel well, and work within but especially outside of doctors’ offices, to prevent chronic health problems before they develop.

But I worry that #CultureofHealth isn’t quite right, as the guiding principle for certain aspects of health care.

So I’d like to respectfully propose we look for some complements to #CultureofHealth. It’s a great concept, but we likely need more if we are going to find a way to offer all our citizens – including the aged and the chronically ill – the care they need and deserve.

(Are you a data junkie? For data on the scope of multimorbidity and associated utilization in the healthcare system, see the figures in the Medicare Chronic Conditions Chartbook. For data on how many older adults have difficulty walking, doing errands, etc, see Figure 2-14 of the Census Bureau report on seniors.)

ISO a meme for the primary care of the medically complex

We need a meme that speaks to better primary care for people with chronic health problems, and that helps us – as healthcare providers – do our job better. Specifically, we need a phrase that reminds us to be better at:

  • Seeing our patients for who they are, and not focusing excessively on their diseases;
  • Recognizing the many unmentionables – financial problems, caregiving burdens, relationship stressors, depression, substance use – that often underlie people’s difficulty in addressing other health issues;
  • Respecting – and facilitating — the involvement of our patients’ families, peer communities, and other sources of support and influence;
  • Helping our patients try behavioral interventions (such as exercise, stress reduction, social activities, diet changes, therapy, and even “activities that create a sense of purpose”) for the many complaints for which these help, instead of quickly defaulting to pills and procedures;
  • Discussing advance care planning, and addressing people’s fear and anxieties about death and declines in health;
  • Delivering the right care, at the right time, in order to help relieve suffering and optimize management of chronic diseases, so as to help our patients move towards whatever goal is a good fit for their preferences, values, and health situation. 

For those of caring for Medicare patients, we need a meme like this because aging adults – and their families — are coming to us for help, but in most practice situations, we’re having a lot of trouble providing the right help. It’s even, I’m sorry to say, common for us to inadvertently make things worse.

#Cultureofhealth is great for the population at large, and will likely have a profound impact on the health and wellbeing of older Americans in the future.

But let’s also promote some complementary memes, to help inspire the work we’ll be doing helping those with aging, and with multiple chronic health problems. Let’s not just bash the “sick care” system; let’s inspire ourselves to take better care of those who are sick and suffering.

So. I want to end this post by asking for your ideas. What meme resonates with you, when it comes to the clinician’s – or even the innovator’s — work of helping medically complex patients, and their caregivers? What phrases might serve as a touchstone?

By the way, #Cultureofcare was recently used to rally support for family caregivers. I do like it as a guiding principle for our work as doctors, but would love to know what others – clinicians, patients, family caregivers – think.

Recap on Caregiving & Technology at Health 2.0

Last week I attended the Annual Fall Health 2.0 conference in Silicon Valley. It’s a big event and there was lots to see and think about.

Of particular interest to me was a set of pre-sessions titled “Future Technologies for Caregiving” and “Easing the Burden: Connected Caregiving Tools.”

The first session was based on the “Catalyzing Technology to Support Family Caregiving” report which came out this past summer; the report itself was based on an expert roundtable convened in April. That group identified three types of tech solutions as especially interesting to them:

  • An “Intelligent Family Care Assistant” to help with day-to-day caregiving by helping to coordinate the family’s tasks in the context of the family’s other activities.
  • “Wearable technologies”—devices worn on or placed in the body, with sensors and/or human interfaces—to help monitor a person’s health and overall condition.
  • Technologies that provide better connections between family caregivers and health professionals, enabling them to work more effectively as a team in providing care.
(Clinicians, how do these sound to you? Post a comment below!)
The report’s core recommendations included:
  • Create better “concept maps” and find more appropriate language to describe the varied and complex caregiving landscape. 
    • LK’s note: the report doesn’t cite much academic literature, but caregiving scholars have been working on this for a while. Some, like Professor Rhonda Montgomery at the University of Wisconsin, have even developed really nifty practical caregiver assessment tools, like this “Tailored Caregiver Assessment & Referral” tool, which improved outcomes in this preliminary randomized study.)
  • Continue to collect extensive data about the prevalence, burden, and impact of caregiving and the role of technology.
  • Spur a broad national conversation on caregiving.
  • Develop compelling business cases for employers and healthcare providers to support caregiving.
  • Provide caregiving coaching as an integral component of all solutions.
  • Inspire social conversations about caregiving to encourage more learning and support within families and communities.

(All main bullet points above are verbatim from the executive summary of the report.)

In the “Connected Caregiving Tools” follow-up session, four companies demoed their products, and then their executives took questions from the crowd, and from the moderator, RWJF Senior Program Officer Michael Painter.
The four companies were CareSync, CareTicker, Independa, and GrandCare.
Below is a Storify with my tweets related to these sessions, and to a few other Health 2.0 moments related to innovation and caregiving.
What I was most excited about: Kaiser Permanente’s exhibit on Imagining Care Anywhere. Although KP’s website for this model doesn’t seem aging-specific, the exhibit at Health 2.0 centered around — get this — a Medicare patient who is diagnosed with early dementia.

The exhibit modeled a comprehensive family-centered care plan, which included safety sensors in the home. And there was a whole panel on how employers and health providers can support the patient’s wife, a working caregiver. It was really nice, and I hope to see more similar things at Health 2.0 in the future.

[View the story “Caregiving at Health 2.0” on Storify]