Originally published in Today’s Caregiver

Family caregivers for seriously ill patients in palliative care play an important role in society. Not only do they provide emotional and physical support for their loved one, but they also assume the responsibilities of preparing meals, providing transportation, maintaining the home, managing medications and coordinating doctor’s appointments. This critical role is often essential for keeping the individual safe and well cared for at home and preventing avoidable emergency department visits and hospitalization.

While many caregivers find this role rewarding, it can also be a stressful, unpaid and under-appreciated position. As a result, caregivers may be at risk for depression, fatigue, financial hardship, changes in relationships and compromised physical health. Too often, caregivers are reluctant to acknowledge the toll that their duties impose or find themselves unable to ask for help from friends and family. While adequate support is vital to sustaining the personal resilience of each caregiver, it is not always available.

For these reasons, it is important that more health care providers, employers and payors recognize the fundamental importance and value of family caregivers develop a mutually beneficial relationship with them and ensure that they are involved in key care decisions. In particular, health care providers should seek ways to identify and support family caregivers, consult with them when their loved one is being discharged from the hospital and provide thorough, easy-to-follow instructions about caregiving tasks.

Responding to these challenges facing both patients and caregivers, home-based palliative care (HBPC) programs offer a much-needed layer of support.  For those who are seriously ill, these programs are designed to address pain needs, symptoms and stress, and offered at any stage of illness and at the same time as treatment. HBPC nurses and social workers also help caregivers by identifying support resources, providing education on performing caregiver tasks, and facilitating difficult conversations about their loved one’s treatment and end-of-life wishes so that they are better prepared to advocate for them. By routinely assessing caregiver needs and including the caregiver in these important discussions, seriously ill persons and their caregivers report better quality of life and satisfaction and have reduced hospital and emergency department visits.

Caregiver Challenges/Barriers

Challenges around family caregivers involve three areas, according to the RAND Corporation:

Identifying caregivers

  • Individuals do not self-identify themselves as caregivers, viewing it as something they do as family members
  • Loved ones do not view family members as caregivers
  • Caregiver information is often missing from patient health records
  • When caregivers are listed, it usually only includes one caregiver, information for multiple caregivers is rarely recorded

Communication/information sharing

  • Family caregivers lack the information or education needed to carry out caregiving tasks
  • Family caregivers lack access to health care providers or patient health records
  • Medical terminology is often too complicated to understand
  • Clinical providers often do not communicate with each other
  • Privacy restrictions limit who has access to a patient’s medical information

Time limitations

  • Clinical providers have limited time and resources to engage with caregivers
  • Health care systems do not provide ways to reimburse providers for time spent coordinating care with family caregivers
  • Family caregivers have limited time and resources to track down providers and get all of their questions answered

Trust/Cultural Barriers

  • The health care team has difficulty interacting with family caregivers from different cultural backgrounds
  • Terminology and language barriers in which family caregivers do not understand medical terminology and/or are non-native English speakers
  • Certain communities lack trust in the health care system

Pandemic Increases Caregiver Burden

For many, the COVID-19 pandemic has made caregiving significantly more difficult as caregivers strive to balance work, caregiving and the addition of other duties, including caring for children or grandchildren who attend school virtually. Not only have caregivers faced greater demands to be technologically competent for virtual visits and digital health tools, but they have also grappled with isolation due to social distancing. COVID-19 has made it challenging to go grocery shopping, pick up medications, interact socially and, because other family members may have opted to limit personal contact to prevent possible spread of the virus, get outside help or seek respite away from the home.

In addition, caregivers have had to take greater precautions with hygiene and cleaning, and spend more time providing emotional support to loved ones who may feel anxious because of the pandemic. All of this is complicated by fears of spreading COVID-19 to the patient they are caring for. With the closing of adult day programs and families choosing to care for their loved ones at home instead of opting for long-term nursing care, the value of care provided by families in 2020 has grown enormously.

These concerns were reflected in the findings of an EMD Serono study: 79% of caregiver respondents reported having to sacrifice more of their personal life for their loved ones and 72% say caring for someone during the pandemic has caused them to feel more burnt out than ever before.

The average time Americans spend caregiving has grown 7.4 hours per week since the pandemic began:

  • Almost 30% of American caregivers believe they’ll spend 41 or more hours per week caregiving in the future due to the impact of the pandemic
  • 72% of respondents expressed concern that they will need to spend more time caregiving in the future because they no longer trust long-term care facilities
  • 67% of caregivers are concerned they will have to work full time remotely while also caregiving for the foreseeable future
  • 56% are also concerned they will lose their job because of the time they spend being a caregiver

Support and Relief for Caregivers

HBPC clinicians consist of specially trained nurses and social workers and other team members who provide caregivers significant assistance, support and relief.  These clinicians develop relationships over time with seriously ill persons and their caregivers through video and home visits, focusing on understanding the physical, emotional and spiritual needs of both the patient and their caregivers. They identify care gaps and arrange for community-based resources, such as transportation, meal delivery, help with utility and grocery bills, ensure that prescriptions are filled, secure in-home equipment, help complete living wills, and provide health coaching and care training to help patients remain safe at home—while making life easier for caregivers.

Take for example this real-life case: Mrs. C. is a 53-year-old woman with advanced amyotrophic lateral sclerosis (ALS), a progressive nervous system disease that results in progressive paralysis due to loss of muscle control. When she enrolled in a HBPC program in April 2020 at the height of the COVID-19 pandemic, she was unable to speak or chew and had lost over 60 lbs. in six months. She was also experiencing severe pain, refusing treatment for her ALS and wanted only to be comfortable. Because of restrictions visiting the home due to the pandemic, the team provided phone and video visits.  The patient’s husband, Mr. C., was feeling very overwhelmed and did not understand how to provide all of the care needed by his wife. The nurse on the team provided instructions and offered links to videos to show him how to use a suction machine for her excess oral secretions and safely transfer her. Because of the HBPC team’s support, Mr. C. gained greater confidence in his ability to provide care for his wife and felt less overwhelmed by her care needs. The social worker met with the couple to describe additional services, including hospice. Over the next few weeks as her condition worsened, the team helped to arrange hospice services so that Mrs. C. could receive care during her final weeks or months at home.

Turning Challenges into Opportunities

Caregivers increasingly provide and monitor complex care, navigating the care system, advocating for their loved one’s care and often paying for services out of their own pockets to help their loved ones. Going forward, health care leaders and policy makers must take into consideration the value of family caregivers in the home acknowledge the benefit of their tireless efforts for the U.S. healthcare system and find ways to relieve these burdens.

The COVID-19 pandemic has highlighted the importance and challenges of being an unpaid caregiver for seriously ill persons as they navigate an uncertain environment on their own. They need the support that HBPC teams can provide, and they need it now.

As a valuable part of the care team, caregivers can learn from HBPC professionals, improve their caregiving skills, gain confidence and self-sufficiency and, ultimately, acquire the tools they need to improve quality of life for themselves and their loved one, relieve stress and gain greater rewards from their hard work.