Life can become frustrating and discouraging for people who have difficulty perceiving, communicating, or travelling - especially when circumstances are unfamiliar.
An advocate can provide valuable assistance by clarifying options, helping their client or loved one make their own choice based on their own values, communicating that choice, and doing the practical things necessary to implement the choice.
When an Advocate is Helpful
Difficulty Perceiving, Communicating, or Travelling
To have a life we love, we need a way to understand the world around us, to communicate our wishes, and to take the steps necessary to make our intentions into reality. This can be very challenging to people who have trouble hearing, seeing, writing, speaking, remembering, analyzing, or traveling from one location to another.
Navigating Unfamiliar Circumstances, Especially Transitions
Many older people encounter difficult transitions and circumstances, where they have little experience or control: undergoing medical tests and treatment, managing chronic health conditions, or moving to a new home or community. After the death of a spouse, they face taking over tasks previously done by their partner - managing money, preparing meals, maintaining a home, or arranging social engagements.
In an emergency, many things need to happen quickly. For example: in a medical emergency the health care team needs to know the patient’s medical history, their current medications and allergies, their wishes for their care, who has authority to make decisions on their behalf, and how to contact loved ones.
How an Advocate Can Help
An advocate can help by clarifying options, helping their client or loved one make their own choice based on their own values, communicating that choice and doing the practical things necessary to implement the choice.
How to Be an Effective Advocate
Download our Tip Sheet in the Files Section below: "How to Be an Effective Advocate for Your Client or Loved One".
1. Be Present
Be present: physically, mentally, and emotionally. This is difficult for many family caregivers since they often live at a distance, they have many other family and professional responsibilities, and a lifetime of emotional “baggage” must be dealt with.
Sometimes it is easier for everyone if a professional advocate participates as a “neutral third party.” A professional has the advantage of living nearby, being able to give their client all their attention, and having professional boundaries and a “fresh” outlook on the elder and their situation.
2. Be Aware of Options, Best Practices, and Experts
As options become more complex and service providers become more specialized, it’s not easy to be aware of all the options. At Care is There Geriatric Care Management, we are constantly updating our database of best practices and local service options. Feel free to call and see if we have ideas to share!
Be careful not to overstep your own expertise. Connect your client or loved one to experts for advice in health care, legal and financial matters, and other technical areas.
3. Ask for your Client or Loved One’s Informed Choice
An advocate’s role is to help their client or loved one make their own choice, then help them carry out that choice. It is not the role of the advocate to make the choice or lobby for a particular choice.
It can be stressful or painful when a person’s loved ones do not agree with their choice. It can bring enormous peace of mind to families when they can see that their loved one understands and accepts the potential risks and outcomes associated with their choice.
Remember that if you feel that the person you are advocating for is putting themselves in danger, you can obtain assistance from Adult Protective Services in your area.
It is very important to understand the difference between the role and powers of an advocate, an agent, and a guardian:
- An advocate is a person that supports or promotes the interests of another. An advocacy relationship, on its own, carries no legal authority and is never meant to interfere with or supersede the judgement of the other.
- An agent under power of attorney is someone to whom the client or loved one (the “principal”) has given legal authority to conduct business on their behalf in accordance with the specifications of the agreement. Agents are not authorized to make decisions or take actions that go against the wishes of the principal.
- A guardian is a person who has been appointed by a judge to take care of a minor child or incompetent adult personally and/or manage that person's affairs. Guardians are authorized to make decisions without the knowledge or consent of their “ward.” In some states, a “guardian” makes decisions about a person, and a “conservator” makes decisions about a person’s finances.
If a person experiences cognitive decline, their ability to make decisions may be compromised - either temporarily or permanently. If you are acting as an advocate for someone with cognitive decline, find out who has been appointed as an agent under power of attorney and obtain copies of the document to be clear on the specifics of the agreement. Always remember that if you are an advocate but are not a guardian, you are not authorized to make decisions for the other person. If you have been appointed as an agent under power of attorney you are only authorized to take actions covered in power of attorney agreement.
Most professional advocates - including those at Care is There Geriatric Care Management - choose not to be appointed as agents under power of attorney due to potential conflict of interest.
It is a good idea for everyone to speak with an elder law attorney about the most appropriate ways to utilize power of attorney relationships for health care decisions and for financial decisions.
4. Communicate Choices to Others
At Care is There Geriatric Care Management, we know the miracle-working properties of communication! So many things can become confused or obscure when a person has trouble hearing, seeing, or remembering. But an effective advocate can make vast improvements in the life of their client or loved one by simply preventing or resolving breakdowns in communication.
When communicating, always keep in mind the privacy of the person for which you are advocating. Many service providers - especially health care providers and financial professionals - require permission to speak with an advocate. Health care providers usually obtain this permission via a “HIPAA Release” form. If your client or loved one has asked you to advocate for them in a healthcare setting, ask them to provide a HIPAA release. Each healthcare provider will have their own form. At Care is There Geriatric Care Management, our clients also provide a general HIPAA release so their healthcare providers can communicate with us. Your elder law attorney can provide you with such a form. For more information, see these frequently asked questions about the privacy rules under HIPAA (the Health Insurance Portability and Accountability Act.)
5. Handle the Logistics
Having options and making choices are just the first steps toward having a life we love. For many older adults, life becomes unmanageable when they can no longer drive to the places they need to go, organize medications effectively, interface with the technology necessary to make things work, or remember all the small steps necessary to do things like get bills paid on time or arrange home repairs.
To make your client or loved one’s preferences really come to life, follow all the little details to the end, until you see everything in place and operating!
6. Create Empowering Solutions
Advocates are the most valuable when things aren’t working, so advocates are often solving problems. Older adults, meanwhile, are sometimes in situations where they feel powerless and vulnerable and therefore don’t want to risk angering people who they fear could make their lives difficult. This is particularly the case for elders in medical or long term care facilities.
Advocates should be sensitive to this fear, and earn the elder’s trust that they will make matters better, not worse.
Effective advocates should look for win-win solutions to problems. In protecting people we care about, it is easy to lay blame for problems and criticize the people, organizations, or systems involved. But to effectively advocate for the person we care about, we need to make collaborative long term solutions that work for everyone. These solutions can often be easily made by speaking positively and constructively with individual people who can be effective in making the change.
In long term care facilities, Ombudsman can help. See resources from the Long Term Care Ombudsman Program. Elder care attorneys can also help.
If you believe your client or loved one is in immediate danger, call law enforcement. If you are concerned they may be abused or neglected, contact your local office of Adult Protective Services.
7. Watch for Gaps
A good advocate is on the alert for whatever new issues or opportunities arise. This is especially during transitions of any kind - for example going to the emergency room, discharging from the hospital, moving to a new home, or adjusting to the loss of a spouse. Visit your client or loved one often, be visible in their life and their community, and make yourself a resource to their entire care team.
Ethics for Advocates
Being an effective advocate means upholding the highest ethics and standards of practice. These are two examples of standards put forth standards for the profession:
- National Association of Healthcare Advocacy Consultants (NAHAC)
- The Health Advocates Code of Conduct and Professional Standards
The NAHAC guiding principles are summarized below:
2. Transparency and Honest Disclosure
3. Protect Confidentiality and Privacy
4. Fostering Autonomy
5. Provision of Competent Services
6. Maintenance of Professional Boundaries
7. Avoidance of Discriminatory Practices
8. Continued Learning
How Care is There can help:
Advocacy is at the heart of our work at Care is There Geriatric Care Management! If you live at a distance from your loved one, if your loved one needs help but won’t accept it from you, or if your client needs more assistance than you can provide through your profession, Care is There Geriatric Care Management can help! We can:
- Visit them often to check on their well-being
- Take them to doctor’s appointments and keep their health care process on track
- Be present during visits to the emergency room
- Organize and be present during transitions from the hospital to home, rehabilitation facilities, or long term care facilities
- Help create and implement a plan for successful aging at home
- Ensure assistive devices like hearing aids, walkers, and glasses are fitted properly and in good working order
- Help choose a new home, organize the move and help them settle in
- Help adjust to loss of driving privileges
- Interview, hire, and supervise home care aides, companions, and housekeepers
- Negotiate home repairs and be present when service people arrive
- Make sure bills are paid, insurance claims are filed, and paperwork is handled
- Organize or conduct outings and social engagements
- Communicate with you frequently so you can relax!
- National Association of Healthcare Advocacy Consultants
- The Health Advocates Code of Conduct and Professional Standard
- Frequently asked questions about the privacy rules under HIPAA
- Long Term Care Ombudsman Program
- Adult Protective Services
If your elderly loved one is frail or vulnerable, contact Care is There Geriatric Care Management for a free consultation about how we can help. Call 800.434.1633 or by email us at Info@CareisThere.com