5 Tips to Help Family Caregivers Navigate Healthcare Communication

In the time since I founded the Caregivers Clinic at Memorial Sloan Kettering Cancer Center in 2011, the first targeted psychosocial support program for caregivers in a cancer center in the United States (U.S.), the responsibilities of family caregivers have increased exponentially. Parents, partners, children, siblings, and friends of patients with chronic and life-limiting illnesses and disabilities perform tasks that are physically, emotionally, socially, spiritually, and financially demanding. The 53 million family caregivers in the U.S. today are increasingly asked to handle medical and nursing tasks once assumed only by healthcare professionals, and too often without training, education, and support. Across illnesses and treatments, medical teams rely on families to shoulder the burden of care, and in some cases – such as when patients receive a stem cell transplantation in the outpatient setting – require the presence of a family caregiver to begin treatment in the first place. And with the proliferation of telemedicine and hospital-at-home programs, this trend is only going to increase.

In this setting, it is unsurprising that one of the most common challenges caregivers in my clinical practice share with me is navigating healthcare communication, both with patients and members of the healthcare team. Communication forms the bedrock of caregivers’ responsibilities. For example, caregivers play a significant role in advance care planning discussions. They must often broker information between patients and healthcare professionals. And those who are designated as healthcare proxies need to engage in open, honest, and repeated conversations about their care partners’ goals of care in order to be able to carry forward those goals of care in the future. Since these types of discussions are both necessary and highly anxiety provoking, below I share some tips to help you feel more confident in navigating healthcare communication as a family caregiver:

1. Before medical appointments, engage in a “consent conversation” with your care partner. Ask them what topics they are – and aren’t – comfortable with you bringing up with the healthcare professional. This will ensure that both of you feel confident to ask certain questions the next time you attend a medical appointment, and know what topics are off-limits.

2. Set an agenda when opening conversations about advance care planning. For example, say to your care partner, “I would really love to talk to you about what type of care you would like to receive in the future if there comes a time when you’re not able to communicate, because having this information will help me to take care of you.” Be sure to ask them if there is anything they want to add to the agenda, as well. And remember, these conversations can and should be repeated since goals of care often shift over time.

Source: Simon & Schuster

3. With their permission, document conversations with your care partner about their goals of care via audio or video recordings. This way you can have these recordings available to you in the future if you are in the position, as healthcare proxy, to be making decisions on their behalf. Having previously documented these discussions, you’ll be able to feel confident that the decisions you are making are not your decisions, but theirs.

4. Speak to your care partner early about how their medical care and long-term care needs will be paid for. Be sure to walk away from the conversation with an understanding of what insurance coverage they have, whether they have a long-term care policy, and what other funds might be available to pay for medical care in the future. It will also be helpful for you to be designated formally as their power of attorney so that you can handle their finances if there is a time when they are unable to do so.

5. Breathe. Taking a deep diaphragmatic breath – that is, in through your nose, held for a few seconds, and then exhaled through your mouth – before opening difficult conversations will help you to feel more in control. This type of breath can lower your stress hormone cortisol and help you cope with whatever difficult emotions may arise when opening discussions with your care partner or members of the healthcare team.