How do I care for a loved one with a health challenge?
If you haven’t faced this question – unfortunately, you will.
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It’s a question that faces everyone at some point in his or her life and thinking about the answer can be daunting. When someone learns of a disability, receives a diagnosis or has an accident, you have a new job – you are now on this person’s care team as their helper and advocate (you may hear this role referred to as a “caregiver”). Not only do we have personal experiences, but a lot of the work we’re doing right now at ACT.md is with families of high-needs children and adults. We get how challenging caring for a relative can be. It is critical that the entire care team aligns around a number of key topics and utilizes resources available (technology and services) for support in this effort. I’d like to suggest five simple questions, which if you can work to answer will ease the burden and align all members of your loved one’s care team.
1. What are the care goals?
There is a significant effort underway in healthcare to ensure that patient and family goals guide the therapies and care that patients choose to receive. Dr. David Reuben and Dr. Mary Tinetti describe this in their NEJM article on “Goal-Oriented Patient Care,” helping us think about a new care paradigm.
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I hope your care team is asking the necessary questions to understand patient priorities; if not, I encourage you to ask what your loved one’s priorities are and proactively share them with the team. There are a range of questions to help you articulate values, preferences, and needs to your care team – which can then be translated into goals of care. Examples include:
- What is most important in your life right now?
- What are you afraid will happen?
- What do you expect the end to be like?
- What are you hoping for?
- What do you want to avoid?
Responses may sound like the following:
- No matter what happens, I want to stay at home – no more hospitals
- I’m worried what all of this will cost
- I want to walk my daughter down the aisle
- I don’t want to fall – I worry it could get injured and I’m embarrassed that I can’t get up
- I don’t want to be a burden to my family, and therefore, want to maintain as much functionality and independence as possible
- When death comes, I want my family around me
Once there are shared goals, the care team can formulate an individualized care plan that reflects the patient’s priorities. This will focus the team and help the patient understand trade-offs or dependencies based on what they value.
2. Who owns care?
This can be a surprisingly difficult question to answer. Knowing who owns care can be challenging when facing an acute health event, but it is particularly challenging when you’re supporting care for a high-needs patient with multiple clinical specialists and non-medical support.
I have a friend with a range of health conditions – heart disease, diabetes, cancer survivor, Parkinson’s disease, and a range of functional limitations. I once asked him, “Who’s responsible for your care?”
He looked at me and said, “I don’t know… I guess I am.”
My heart sank. This isn’t a criticism of his clinicians or caregivers, but a real reflection of the inherent difficulty in coordinating complex care in today’s healthcare system. This example is unfortunately the norm; more often than not, patients and their caregivers don’t know who is (or should be) involved in their care. Even in new models of care (e.g., ACOs, patient-centered medical homes) clinicians and patients struggle to keep track of who is on each care team.
Being able to identify who is working with a patient (clinician, caregiver, community resource, etc.) and their role is critical for your ability to help care for a loved one experiencing a health challenge. One of the simplest goals of my work is to bring transparency into who’s on each patient’s care team.
3. What is the plan of care?
A care plan should outline information such as goals, emergency guidelines, involved community support services, nutrition plans, any mental/behavioral health descriptions and interventions, and a comprehensive list of diagnoses/problems/allergies/medications, etc. in one place. This can be a very difficult document to obtain. A plan of care is not a collection of several different static medical documents from your various clinicians. Records from providers are written in language for clinical purposes only and are driven by what is required for billing, not to articulate and communicate the plan for multiple stakeholders.
Care team members, including yourself as a caregiver or patient, need a “wikapedia-like” document that is accessible via the web 24/7. This allows for multiple authors to contribute and make updates in real-time; therefore, the plan is comprehensive, always up to date, accessible and sharable as patients move across settings and in emergencies. We’ve seen this capability as a critical component for team-based care and extremely empowering to patients and caregivers.
4. What are the specific activities that need to happen, and who is doing them?
The plan of care needs to be complemented with specific activities including non-medical tasks such as ensuring transportation is arranged, housing has been secured, and the patient has the necessary food.
Everyone, including you, will need to understand the specific tasks that need to get completed, who is responsible, and when they need to get done.
5. How do I communicate with the care team?
Now that you know the team and the plan, you need to be sure you know how you can ask your care team questions, notify them of updates, and include new people as you move through this journey. Find out if your team has a web-based technology platform, which may include texting and video, or if you will have to rely on outdated methods of communication such as phone and fax. Advocate for convenient access! Healthcare organizations should be providing patients and their families ways to communicate with them when, where, and how they want to engage.
Reality is Motivating
Helping the individuals who work to manage care and support patients with difficult health challenges is the focus of my professional life.
This past week I attended a conference at the National Academy of Medicine (NAM) in Washington, DC. The topic of the conference was Models of Care for High-Need Patients, and it brought national leaders together to discuss the 5% of patients in the U.S. who represent 50% of healthcare costs – a sobering statistic.
We heard directly from a young man that the NAM would classify as a “high-needs patient.” This young man became a quadriplegic after a horrific accident five years ago. It was powerful to hear about the challenges he faces navigating daily living. When patients and their caregivers face such substantial medical challenges AND functional limitations, it’s the simple things that make living possible, like reliable and supportive caregivers, ease of communication, and team coordination. These drive positive outcomes and satisfaction in all stakeholders.
We’re fortunate to live in a time where the tools and resources are available to support all of us as we answer the question, “How do I care for my loved one?”
I am confident the questions I outlined are will be helpful as you navigate a health journey now or in the future.
