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.
- 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 resist palliative care, even though they would’ve likely found it beneficial.
- Other families who would like palliative care services find themselves unable to access them, especially in the outpatient setting.
- 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.
- 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?
- 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.
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.
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