Making end-of-life care decisions are difficult under any circumstances, but in the midst of a pandemic, these conversations can become even more challenging.

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After all, with our collective consciousness focused on responding to the virus and preventing deaths, it can be unbearable to think about facing death head on. Consequently, hospice care has become a forgotten service of the COVID-19 crisis.

Managing care at the end of life — the medications and pain relief, medical equipment and supplies, and personal needs such as bathing and grooming — is often overwhelming for family members. Caregivers must learn how to dispense medication, operate equipment correctly, and manage their loved one’s pain and other symptoms, which are a lot to handle for most people without a medical background.

The stress, fear, sadness and anger can quickly lead to caregiver burnout, which can manifest in serious health issues — high blood pressure, headaches, weight loss and reduced immunity.

The threat of COVID-19 only adds to that. Caregivers might be especially worried about contracting the coronavirus and passing it on to their loved ones. They may have less of a support network than usual due to stay-at-home requirements. Simple tasks like grocery shopping or picking up medication end up taking much longer and causing even more stress.

A screen shot from the website of Islands Hospice. Screenshot

Hospice can help alleviate the burden on caregivers, providing medical expertise and clinical support when it comes to monitoring a loved one’s condition. Hospice workers can help with pain management, which is a critical part of end-of-life care, but which family caregivers often identify as the largest care burden.

Hospice provides a sense of structure and support for families and patients, often in the comfort of the patient’s own home. It also reduces repeat hospitalizations, which is especially important during an epidemic.

The Days Before Death

Perhaps one of the most important, and often overlooked, services of hospice care is counseling the patient and family on what to expect in the days before death.

When death is imminent, patients may lose their ability to eat or drink, have breathing problems or sleep for long periods of time. Their personality may change. Caregivers can sometimes withdraw due to burnout or grief. Helping patients and loved ones prepare for what they may experience physically, emotionally and mentally can help everyone find peace when the time comes to say goodbye.

Caregivers can sometimes withdraw due to burnout or grief.

Stay-at-home orders have forced us all to delay important events and decisions, especially regarding health care. Patients are putting off doctors’ visits and avoiding hospitals to reduce their risk of exposure, especially if they have compromised immune systems. With businesses and schools closed, trips postponed, and events canceled, it may seem like life has been put on pause for the past few weeks.

But patients with a terminal illness may not have the luxury of waiting until things go back to normal to enter hospice care. For them, time marches on, and terminally ill patients often do not have time on their side.

During this health crisis, it’s even more important to embrace the comfort care that hospice can bring to households facing a terminal prognosis. With all the stresses and fears over COVID-19, patients and families need support more than ever. Taking the first step to engage these services will allow many of Hawaii’s families to find the help they need at the end of life.

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