People who are ill face a myriad of challenges – both medical and practical. How can you help? Follow these 10 advocacy tips. This checklist is designed for helping a patient (or yourself) with a chronic or complex health condition; it can be used for other situations.
1. Establish a Team
Create a team to support the patient soon after diagnosis.
- Core team should have up to 4 people with a designated leader. Extended team can have more people willing to lend help upon request.
- Determine frequency of team meetings and communications.
- Team members can include the patient’s friends, neighbors, family members (both local and long distance).
2. Figure Out Initial Logistics
Make sure that information is easy to find and plans are made for the future.
- Set up a binder/tracking system to maintain important records – medical, insurance, other info.
- Assess home environment – who lives with the patient, how can they assist?
- Evaluate home safety and fall risks. Is a security/video system needed?
- Create a key phone number list. Post it in multiple places, update every 3 months.
- What to do in an emergency? Clarify red flags and channels of communication.
- Transportation to appointments – is the patient allowed to drive/okay with driving?
- Use a blog or website to efficiently update family and friends.
- Ensure appropriate forms are completed and signed: Power of Attorney, Advance Directive, Healthcare Proxy, Financial Proxy, Will.
- Submit release forms with insurance plans and healthcare providers for authorized representative(s) to discuss patient’s personal and medical information.
3. Coordinate with the Medical Team
Getting the right treatment, at the right time, and in the right way can be daunting.
- Assess healthcare provider expertise – a new medical condition may prompt a change in primary care and need for more specialists.
- Establish a working relationship with providers/clinical support team.
- Arrange medical escort to key appointments. If no in-person escort is available, explore phone conferencing or video recording.
- Check health plan and insurance online portals for summaries and messages.
- Manage calls/emails to/from providers to schedule services and appointments.
- Maintain a current list of drugs, including Rx, OTC, supplements, vitamins.
- Learn about marijuana availability (legal or medicinal use) to help the patient research options for symptom management.
- Prescription management – ensure meds are taken on schedule.
- Consider ordering a medical alert bracelet or monitoring system. Make sure to include an “In Case of Emergency” (ICE) phone number.
- Acknowledge when you’re out of your league; refer to trained experts for guidance.
4. Understand Health Insurance
Insurance rules are hard to interpret, especially when paperwork starts mounting.
- Determine deductible, coinsurance, copays, excluded and non-covered services.
- Review claims to ensure correct payment and patient financial responsibilities.
- Assess options and prepare forms for health plan enrollment/switch of coverage.
- Prepare and manage appeals for out-of-network care.
- Research SSDI/Medicare/Medicaid eligibility, monitor as condition/income changes.
- Confirm other policies – disability, long term care, life insurance, dental, vision.
5. Organize Personal Tasks
All those everyday errands can become overwhelming when someone is sick.
- Calendar management – make sure all appointments are entered with location and phone number, transfer info from paper to electronic calendar.
- Maintain a website username/password list, stored in a place known by ICE contact.
- Set up a white board/chalk board in patient’s home to list important information.
- Confirm who has access to bank accounts and credit cards (as backup/proxy).
- Ensure that insurance, taxes, utilities and mortgage bills are paid, as applicable.
- Home repair – keep a task list and note when tasks are completed.
- Assist with writing, reading, email, retrieval of voice mail messages as needed.
- Set up a paperwork and electronic filing system that is easy/will be used by patient.
- Mail (USPS) management, prioritize key items for follow up.
6. Consider Home Care
Home-based care is ideal when assistance is needed to maintain independence.
- Research and scrutinize licensed agencies, obtain recommendations.
- Attend initial intake to help patient determine type and frequency of services.
- Set up meal/food delivery and mail order drug delivery.
- Have others do housekeeping, cooking and cleaning.
7. Ensure End of Life Planning
Planning is important at all stages of life, crucial for those with a terminal illness.
- Research how to archive personal and family history and photos.
- Set up a palliative care consult for the patient to voice values/preferences.
- Encourage use of hospice services once treatment options are exhausted.
- Understand transition stages of dying and support options, including physician-assisted suicide.
- If the patient has a pet, ensure there is plan for the pet after the patient has died.
- After the patient’s death, explore help for family and caregivers to navigate tasks and emotional needs.
8. Seek Professional Help
Consider which professional services make sense. Determine role, availability, cost.
- Patient Advocate: Why Hire an Advocate?
- Clinical Case Manager
- Religious/Spiritual Support
- Social Worker
- Accountant/Bookkeeper/Tax Preparer
- Home Repair Person
9. Watch Out for Caregiver Fatigue
Take care of yourself and the team.
- Ensure that primary caregiver/family members/team members regularly touch base to assess roles and resources.
- Encourage and practice coping skills including stress management and meditation.
- Learn signs of burnout: withdrawal from friends and family, anger, denial, anxiety, sleep disruption, exhaustion, getting sick more often.
- Ensure that children have support to process the situation as a parent becomes more challenged.
- Express appreciation to each other.
10. Be Patient-Centered
Every person and situation is unique. Respect autonomy.
- Every patient has rights and the final say to determine lifestyle and treatment choices (unless declared incompetent by medical professionals).
- If you see something, say something. Although it’s important to respect privacy, alert the primary caregiver if you notice changes in behavior that may need follow up or endanger safety.
- Advocacy is validated by every action you take. You can make a difference.
Lots of apps and social media resources are available. Here are some good ones.
- Google shared calendar – determine who has access and editing privileges.
- Dropbox – store large files and facilitate sharing of information.
- CaringBridge, PostHope or similar site for updates.
- GoFundMe or similar site for fundraising and crowdfunding.
- Facebook sites – open or closed forums with condition-specific support.
- Medical information and patient support websites – be wary of sites with ads.
- Phone apps, often condition-specific.
- Lyft, Uber, other ridesharing apps used on smartphones or laptops.
- TSA Cares – helpline to provide assistance for airport screening.
- Munchery, Instacart, Blue Apron, Meals on Wheels, Meal Train – food delivery.