This article includes: Information that you can view, download and print
This article is for people who are the primary, regular caregiver for an adult child, parent, other older relative or friend. For resources on communicating with medical professionals when you care for a minor child, or a child transitioning from pediatric to adult health care, you can view these resources from PAVE:
- How to Have Good Communication with Your Child or Youth’s Doctor
- Insurance in Healthcare Transition
- I Have to Sign What? Healthcare in Transition
Introduction: The focus of this article is to help you understand:
- Why it’s important for your loved one’s doctor to know about your family caregiving situation
- What the doctor and medical team can do to support you as you care for their patient.
The article also covers basic information about the HIPPA Law and the legal healthcare documents you may need when you care for an adult with chronic medical condition or disabilities.
Caring for a family member or close friend
For many people, caring for a loved one who is aging or has a severe medical condition or a disability is natural. That’s what loving and helping means in a family. Caring at this level can create deep closeness; it’s a privilege to share so much time and have your actions show how much you love them.
At the same time, life doesn’t always accommodate family caregiving. Employers may not make it easy to take time off when your loved one needs you—even though in Washington State there are several options to take unpaid or paid leave. Other issues include not having enough room in your own house or adequate transportation to and from your loved one’s home. Some of us don’t realize how much time is involved.
Family caregiving is usually a lot of work! It can be an additional job on top of the work you usually do. Juggling this “extra job,” regular employment and home life causes “caregiver stress.” All family caregivers are at risk for caregiver stress, as family caregiving continues and becomes more intense as a loved one ages or their health conditions get worse over time.
What do doctors know in general about family caregiving?
Pediatricians often assume parents or guardians who are raising a child with a disability or medical condition are a part of that child’s “medical team,” because parents are responsible for making sure that treatments are followed.
Doctors who treat adults, and those who treat elderly patients (geriatricians) don’t always have that viewpoint, even when their patient always comes to the office with a family member. They are usually more concerned with making sure the family caregiver understands their patient’s medical condition(s) and making sure the treatment plan is followed than having the caregiver be a part of a healthcare conversation.
If a medical professional has been a family caregiver, they know quite a lot based on their personal experiences. This often encourages them to ask their patient’s caregiver how the caregiving situation is going and how the caregiver is doing—physically and emotionally. When the medical professional doesn’t have that life experience, the caregiver is rarely asked anything about caregiving or their personal well-being. (You can read the study for free at Pub Med Central).
A 2020 study noted that 45% of family caregivers of adults and elders were never asked by their loved ones’ doctors if the caregiver needed support handling caregiving duties, including training on medication management, at-home medical procedures and safely helping with daily living activities. “Caregivers were often hesitant to speak up about these concerns, as medical visits can be short and they wanted the doctor to focus on the patient”. (Read about the study on the AARP website).
The good news is that this situation is changing. Family caregiving and family caregivers are a topic of national discussion by healthcare experts, lawmakers, government agencies, and medical professional associations. Whether they realize it or not, family caregivers are an essential, and usually unpaid, part of our health care system. Some policy makers want doctors and other medical professionals to do more for family caregivers, such as:
- Being given training by medical professionals on how to safely perform medical tasks and treatments in the home (Medicare covers this type of training for family caregivers).
- Taking time in each patient’s appointment to speak privately with the family caregiver about their own health and well-being
- Recognizing that the family caregiver’s level of stress or well-being affects their patient, and providing resources and referrals to support the family caregiver
“Expert guidelines already instruct health care providers to identify and work with caregivers, but this generally doesn’t make its way into practice,” said Dr. Anna Chodos, a Professor of Medicine at the University of California, San Francisco. Health care visits are structured around tasks that providers document and bill for, she explained. “If engaging with caregivers is not in that structure, it looks to health care providers like it’s not part of the visit”.
It’s important that your family caregiving situation is something your own medical providers and your loved one’s doctors know about, just like they need to know about other things that impact people’s lives. When they do not have this information, they end up making decisions about your loved one’s treatment or well-being without the full story. The care you give at home, and your ability to do it accurately affects your loved one’s health. Your:
- Energy level
- Sleep
- Overall or specific health concerns or physical well-being
- Mood or emotions
- Employment
- Financial situation
- Other family members’ needs affect your loved one’s care, because they affect you.
How can you get a doctor’s attention to your family caregiving situation and your questions and concerns?
Become familiar with the important members of the medical practice team, especially the ones who pass on information to the doctor (a doctor’s assigned nurse or assigned medical assistant) and the staff at the front desk who schedule appointments. Treat them as the valued members of the team that they are, and they can be very helpful.
- They can often help follow up with referrals, tests and lab results, and urgent prescriptions.
- It makes sense to alert the doctor ahead of an appointment or even schedule a separate phone call with the doctor, the doctor’s nurse or medical assistant if you want to speak about specific issues.
- It’s a good idea to begin with one or two urgent issues or questions, or a specific concern. This allows the medical professional to focus on your most important needs.
- Does the medical practice have an online “health portal” where patients can make appointments, read lab results, pay bills, and contact the doctor or member of the medical team? If so, ask for access (with your loved one’s permission unless you are their healthcare proxy -see legal documents, below).
- You can also request a scheduled phone or in-person discussion by email; most medical practices have a general office mailbox. You don’t have to give details by email but address the request to the person most likely to get the doctor’s attention (usually the nurse or medical assistant).
You can use this downloadable form to organize your thoughts or send it to the office.
How does a family caregiver get access to important medical information with the HIPPA law?
Because HIPPA requires a patient’s consent to give out or share private medical information, even family members and family caregivers need to get permission from an adult person they care for, in order for doctors or hospitals to share information and medical records. Patients can pick up a HIPPA release form (also called a HIPPA waiver) at their doctor’s office that will allow for a caregiver to be a larger part of the healthcare conversations.
What legal documents do you and your loved one need for you to act for them on medical care?
To allow specifically named family members or other individuals to make health care decisions on their behalf, there are several options. Which one is best for your situation depends on your loved one’s cognitive and verbal abilities. A lawyer can be consulted on how to go about getting the following. A Healthcare Proxy, also called Healthcare Power of Attorney, gives you, or someone else your loved one chooses, the authority to speak with doctors and make medical decisions on their behalf. Powers of Attorney are usually created with the assistance of a lawyer and signed by your loved one and by the person they choose to be their “agent”.
A Living Will is a written and legally binding document that tells a person’s doctors what their preferences are for end-of-life care. For a family caregiver, it lifts the burden of having to make decisions on this topic. Your loved one is the person who fills it out and signs it. Each state has different laws and practices on this type of document. AARP has a short article that also has links to state-specific Living Will forms.
The healthcare proxy and the living will are often part of one document called an “Advanced Directive,” because it tells healthcare professionals who can make medical decisions in advance of any situation where an individual is unable to communicate with their doctor or make decisions.
A Durable Power of Attorney is a type of power of attorney doesn’t depend on a physician declaring that your loved one has become incapacitated and unable to make their own medical decisions. It becomes effective once it has been signed by your loved one, and the person selected to have the power of attorney.
If the person you care for has Medicare health insurance, a Medicare Authorization to Disclose Personal Information gives a family caregiver the authority to talk with Medicare about claims, eligibility, payments to providers, and more. The form is available for download and print from the Centers for Medicare and Medicaid Services.