Involving the Family Caregiver in Optimized Prescribing

Contributed by: Susan Haggarty and Dr. Jasneet Parmar - View bios

Case

Lisa, an 83-year-old woman, lives with her husband, Mike, in a seniors’ apartment. Mike contacts your clinic as Lisa’s blood glucose has been uncontrolled, she is agitated during respite and she is experiencing diarrhea.

Issue 

How does one involve family caregivers to optimize prescribing?

Background

How often are family caregivers involved?

Caregivers are family members, friends or others who provide unpaid care. A study conducted by the Canadian Institute for Health Information found that 98% of Home Care clients have an informal caregiver. Family caregivers provide approximately 75% of the care making them integral team members.¹

Why is involving family caregivers important?

As the patient moves through the health care system, family caregivers are often the only consistent team member caring for the patient. When patients are unable to express/advocate for their own needs, caregivers provide essential information about patients’ preferences, routines and life history. Caregivers are typically actively involved in medication management and they report considerable strain from this activity. Family caregiver collaboration in care planning and prescribing can ensure care plans meet the patient and caregiver’s needs and that challenges and opportunities are identified.

How do we support caregiver involvement in prescribing?

By building an open and honest patient-caregiver-practitioner working relationship through:

1. Including family caregivers as partners-in-care
   Most patients and their family caregivers want to participate in decisions about care. Family caregiver participation and commitment to the care plan is often essential to its success. They are knowledgeable about patient’s goals, lifestyle, vulnerabilities and strengths. Designing the care plan together offers an opportunity to utilize everyone’s skills and to navigate challenges before they impact care. The plan should be dynamic with check-ins not only on the patient but on their support system and their ongoing capacity to provide support.
2. Timely and tailored information empowering caregivers to ask questions
   Family caregivers in the home environment provide essential care and monitoring. It is imperative that caregivers are aware of the rationale behind medication changes, what to monitor for and who to contact with concerns. Informed caregivers are more likely to be open to modifications, provide input and identify gaps. Asking caregivers to describe how they have been managing medications can offer important insight. Caregivers often resolve caregiving challenges with solutions they might not think to share (e.g., crushing medications due to swallowing issues, giving supper and bedtime medications together due to an early bedtime). Sometimes their modifications improve care but sometimes have unintended consequences which can then be discussed. Family caregivers should be encouraged to voice concerns as complex medication regimens may be difficult to implement and practitioners should work with caregivers to reduce the burden of managing medications.
3. Establishing a forum for building relationships and ongoing communication
   Centralized support has been shown to increase client and caregiver satisfaction.⁵ Communication breakdowns, especially at transitions, can cause stress and harm. Family conferences and annual reviews can improve communication and help build partnerships. A strong relationship with the prescriber has been shown to influence patients’ and caregivers’ views on the value of medication and is fundamental to deprescribing medications when appropriate. Ongoing dialogue between team members, including the caregiver, can better support patients through changing health needs and situational changes (e.g., if the caregiver becomes ill).

Back to the case

Lisa suffers from dementia and diabetes. She was recently discharged from hospital with two new medications (empagliflozin and insulin glargine); metformin was discontinued due to gastrointestinal side effects.

Prior to making medication changes, the practitioner and Mike discuss the challenges since discharge. Mike shares that due to limited finances they have been using up the pre-hospital blister packages and didn’t get the empagliflozin filled. He was unaware that metformin caused diarrhea, or that it had been discontinued in hospital. Mike struggles to demonstrate how he dials up the insulin. He expresses frustration that Lisa has been resistant to him injecting insulin in the back of her arm, so she has been receiving insulin only when she is agreeable. Mike is feeling rundown and is concerned respite will be cancelled if Lisa continues to be agitated with the respite worker.

The practitioner works with Mike to navigate these challenges by discontinuing empagliflozin and metformin, ensuring Mike is comfortable dialing/administering insulin in her abdomen, and arranging for a Social Work referral. While developing the care plan together, Mike also notes that Lisa is calmed by music, so music is incorporated into her respite care.

The clinic ensures that Mike is comfortable with the medication changes and checks in the next day. Two weeks later, Mike reports that Lisa’s blood glucose results have stabilized, her diarrhea has resolved and respite is going well.

References

1. Health Council of Canada (2012). Seniors in need, caregivers in distress: What are the home care priorities of seniors in Canada. https://healthcouncilcanada.ca/files/HCC_HomeCare_FA.pdf
2. Canadian Institute for Health Information (2010). Supporting informal caregivers - The heart of home care. https://secure.cihi.ca/free_products/Caregiver_Distress_AIB_2010_EN.pdf
3. Smith, F., Francis, S-A., Gray, N., Denham, M., & Graffy, J. (2003). A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services. Health and Social Care in the Community, 11(2), 138-145.
4. Scott, S., Clark, A., Farrow, C., May, H., Patel, M., Twigg, M. J., Wright, D. J., & Bhattacharya, D. (2019). Attitudinal predictors of older peoples’ and caregivers’ desire to deprescribe in hospital. BMC Geriatrics, 19(1), 108.
5. Lang, A., Macdonald, M., Marck, P., Toon, L., Griffin, M., Easty, T., Fraser, K., MacKinnon, N., Mitchell, J., Lang, E., & Goodwin, S. (2015). Seniors managing multiple medications: using mixed methods to view the home care safety lens. BMC Health Services Research, 15, 548.
6. Reeve E., Low L.F., & Hilmer S.N. (2016). Beliefs and attitudes of older adults and carers about deprescribing of medications: a qualitative focus group study. British Journal of General Practice., 66(649), e552-60.
7. Pickering, A.N., Hamm, M.E., Dawdani, A., Hanlon, J.T. Thorpe, C.T., Gellad, W.F., & Radomski, T.R. (2020). Older Patient and Caregiver Perspectives on Medication Value and Deprescribing: A Qualitative Study. Journal of the American Geriatrics Society, 68(4), 746-753.