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Nancy Lerner, DNP, RN, associate professor at the University of Maryland School of Nursing, talks about how you can play role in planning your loved one’s care in a nursing home during the pandemic and beyond.
During these challenging times, it is more important than ever for you to be involved in care planning for your loved one. The good news is that health care providers and the facility staff share your desire to make your family member or friend safe, comfortable, and happy. Your involvement in care planning is welcome and important. Here are some ideas on how you can communicate, navigate, learn, and share today and into the future.
Let’s start with communication. Make sure practitioners and facility staff know when and how to reach you. If you have multiple phone numbers, let them know which ones they should use and when. If you prefer emails or texts, make sure they have accurate, up-to-date contact information.
Get to know the individuals who will be caring for your loved one, especially front-line caregivers like nursing assistants or aides. Let them know your loved one’s likes and dislikes, preferences, fears, interests, hobbies, favorite foods, and more. As they spend more time with your family member or friend and get to know the person better, these caregivers may have important insights into issues such as addressing behavioral symptoms, what effects medications are having, and how to improve the person’s mood or sense of well-being.
Stay in touch with the care team so that you know about any changes in your loved one’s condition or other problems or issues that develop. Then you can work with them to revise or change the care plan as needed. It is important for both your loved one and you to have realistic goals and expectations. For instance, talk to your loved one’s practitioner about what a frail older person is likely to experience from ventilation. Discuss the benefits and risks of various interventions.
It is important to have a trusting relationship with your medical practitioners and other team members. This starts with open discussions. It’s okay to have questions and concerns and to say, “I don’t understand.” You’re not expected to know everything. The practitioners and other team members will be honest with you about treatment options, possible outcomes, and other things that will enable you to participate in care planning. In truth, you may not like or agree with everything clinicians and caregivers say or suggest. However, they are there to help you make decisions that are in the best interest of your loved one.
If you need more information to make decisions or help with care planning, let the physician or other practitioner know. They can point to credible sources that can help you. It’s okay to look for information on your own, but be aware that not every website, publication, or so-called expert will have accurate or reliable information — and they don’t know your loved one’s situation.
Particularly during these chaotic times, when in-person visits and interactions may not be possible, you may not be able to reach your loved one’s physician or other practitioner immediately. The good news is that there might be other people at the facility who can help. Find out who to contact for different kinds of information. If you don’t get an immediate response, don’t assume you’re being ignored. Try again and make sure you leave up-to-date contact information.
You’ve heard, “We’re all in this together.” This certainly is true when it comes to care planning for your loved one. The practitioner and other care team members are there to work with you and provide the best, most personalized care for your family member or friend.
Questions to Ask Your Practitioner
What are some of the potential health outcomes for my loved one? Is he or she likely to get better and go home? What conditions or illnesses are likely to get worse over time?
How often should we review my loved one’s advance directives, care preferences, and goals/objectives of care?
How can I be a part of care planning? How can I make sure my input is useful and practical?
What You Can Do
Make sure your loved one has his or her preferences and wishes documented.
Help the practitioner and caregivers get to know your loved one and how to keep him or her safe and happy.
For More Information
Advocate Health Care of Illinois, “Advance Care Planning During COVID-19 Toolkit,” 2020, https://bit.ly/3dCOlm2