If your child is having their tonsils removed or your grandma is having a serious medical crisis in intensive care, each patient needs a family advocate. You are not always allowed in the room and sometimes they are not allowed to stay overnight. But having someone with the patient is important. ₁
Knowing how to be an advocate can be overwhelming. An advocate is there to provide support and assistance whenever possible. Hospitals can be overwhelmed with patients and a shortage of employees. So, it can be a “fine line” between being a help and more of a problem. ₂
How to be an advocate
First, try to understand the medical problem. Medical professionals typically provide a diagnosis or at least share what they think the problem may be. It is okay to ask them questions and also express your willingness to help. For a first time visit to the hospital, the machines and equipment can be confusing and when certain alarms “sound off” it can frighten you. This is when it is important to know whether to ask for help or wait. The medical staff is typically tuned into the different sounds and know when it is critical. Many times, an IV-line needs adjusted, or an oxygen lead comes loose. And there is no reason to worry. There are so many numbers to watch and alarms that it is easy for a first timer to panic. If the nurse has time, they can tell you which numbers to watch. And you can be tempted to press the call button for help when it is not needed.
What family members can do to help
The family can assist with bed pans, bathroom visits, getting ice or water, or feeding the patient. But it is important to know if they are allowed to get up and walk without a hospital employee. In some cases, the hospital personnel must be with the patient. In some cases, they want them to wait on certain beverages. For example, a chemical stress test requires that they have no caffeine within a certain amount of time before the test. ₃ Bringing in their favorite coffee may be a problem and delay the testing that is needed. Just check with the nurse first. It is most helpful to the patient to have the family member work with the medical professionals as part of the team and maintain open communication. ₄
Emotional Support
Family members know the patient and may be able to identify what makes them most comfortable. Do they like to have their hand held during stressful moments or when they are in pain? Would they rather have a visit from friends or a phone call? Many people have heard of Five Wishes and know that it considered a legal document in Florida. This form is helpful for each family member no matter how old they are. Everyone feels differently about what makes them feel comfortable. This can provide questions to start the conversation. People’s opinions may change over time, so it is important to revisit the topics. Some of the research has shown that a loved one being present can reduce anxiety for the patient. ₅ This can help with healing and overall well-being.
Continued Caregiving at Home
Being with a family member in the hospital can help the patient when they are able to go home. The caregivers understand the routine, the needed therapies, and can help the patient transition. Most patients need to rest. As an advocate you can make any changes needed at home. Provide meals at regular times. If you track what they eat, when they sleep, the bathroom habits and bathing, keep a record to share with the doctors. Sometimes, you need to take turns with other family members. It is important to tell each other what they need to write down and the patient’s schedule. After they are released from the hospital, they still need emotional support. And the hospital usually gives a list of instructions and signs what to watch. This should help them continue to heal.
Organized records and appointments
So many things are happening in the hospital and the patient may not feel well enough to remember all the medical instructions when they go home. The family caregiver can help keep medicines organized. They can maintain therapy schedules. And during follow-up visits they can share details. If the patient needs to do blood pressure checks, do certain exercises or maintain a special diet, these can all be documented. Recording this information every day will help the medical professionals make the best decisions for continued care.
Many times, someone needs to help follow up with insurance and maintaining the financial records. If financial concerns are causing stress, it can interfere with healing. ₆ UF IFAS Extension can assist with financial counseling. For more information, go to this link.
There are many ways a family member can help a patient during a hospital experience. Find out what is most important to the patient, keep open communication with the doctors and nurses, and as an advocate and caregiver, take care you!
References
₁ Danielis, M.; Iob, R.; Achil, I.; Palese, A. Family Visiting Restrictions and Postoperative Clinical Outcomes: A Retrospective Analysis. Nurs. Rep. 2022, 12, 583-588. https://doi.org/10.3390/nursrep12030057
₂ Britt Marie Ygge MPH PhD RN,Christina Lindholm PhD RN,Judith Arnetz MPH PhD, Hospital staff perceptions of parental involvement in paediatric hospital care. Journal of Advanced Nursing. Volume 53, Issue5. March 2006. Pages 534-542.
https://doi.org/10.1111/j.1365-2648.2006.03755.x
₃ https://www.hopkinsmedicine.org/community_physicians/specialty_areas/_documents/jhcp_nuclear-cardiac-stress-test-instructions.pdf
₄ N. Gur-Yaish, K. Shulyaev, J. Smichenko, M. Bathish, E. Shadmi, A. Zisberg,
Perceptions of staff and family responsibility to provide hospitalized older adults with basic activities care and emotional support. Geriatric Nursing, Volume 42, Issue 6, 2021. Pages 1247-1252. ISSN 0197-4572,
https://doi.org/10.1016/j.gerinurse.2021.05.003
₅ Sari DK, Dewi R, Daulay W. Association Between Family Support, Coping Strategies and Anxiety in Cancer Patients Undergoing Chemotherapy at General Hospital in Medan, North Sumatera, Indonesia. Asian Pac J Cancer Prev. 2019 Oct 1;20(10):3015-3019. doi: 10.31557/APJCP.2019.20.10.3015. PMID: 31653149; PMCID: PMC6982683.
₆ Yousuf Zafar, S. Financial Toxicity of Cancer Care: It’s Time to Intervene. JNCI: Journal of the National Cancer Institute. 2015
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