Don and Davita Nowland

A Caregiver's Story: What I Learned About Palliative Care

Early one morning in 2017, my husband Don fell in our bedroom.

A decade earlier, Don had been diagnosed with a rare, slow-growing form of gastrointestinal cancer for which there was no cure.  

After his diagnosis, we set out to enjoy the time we still had to spend with each other and with our family and friends.  Don’s cancer remained manageable for quite some time, and he had a good quality of life. Then, in 2015, his cancer became more active.

When he fell, I knew he was in the end stages of his disease. I couldn’t help him to get back up, so I called 9-1-1, and the ambulance transported Don to our local hospital emergency department. There, the providers found a massive abdominal infection, and he was transferred to that same hospital’s Intensive Care Unit (ICU) for aggressive lifesaving treatment.

Making the end-of-life decision 

In the ICU, Don’s condition continued to deteriorate. After three days, in my stressed and sleep-deprived state, I needed to make the right decision to minimize my beloved husband’s suffering.

I asked his nurse if it was the right time to discuss hospice. She confirmed that it was, and we awaited the arrival of the hospice coordinator.

Since his diagnosis, Don had been in the care of an excellent oncology team at Dana Farber Cancer Institute in Boston. He also had a visiting nurse.  Yet, in that local hospital, I never felt so insecure and out of control and alone.  

Palliative care for patients with advanced illness

Now, two years on, I realize that I didn’t have to be alone, and that there was a better approach.  

Long before Don’s fall and emergency hospital admission, I had, in fact, made contact with Care Dimensions’ Palliative Care Team.   We thought we knew how palliative care worked, but in hindsight, I didn’t understand it fully.

Now I know that the Care Dimensions team could have collaborated with his medical oncology team to participate in pain management and quality-of-life needs. Also, if we had engaged them earlier, the palliative care experts would have been able to help us recognize when we had reached a critical juncture in his condition and to plan next steps.

What my story means for other caregivers and families

From the hospital’s ICU, Don was transferred to the Care Dimensions Kaplan Family Hospice House where he received compassionate inpatient care and services.  This allowed us to find peace, and for this I’m grateful.

He died at The Kaplan House just before his 74th birthday and our 22nd wedding anniversary.

Looking back, I know that there are things that I could have done differently to make Don’s final days better for both of us and to help us to feel less afraid and out of control.

Mostly, I have learned that, before those critical moments, it’s important for caregivers to have the difficult conversations about a care and contingency plan. A palliative care team can help us with these conversations—while also helping us to manage our loved one’s complex symptoms, and collaborate with the medical team for a better quality or end of life.

3 things I’ve learned about end-of-life and palliative care: 

1.Talk palliative care: The time to discuss and plan for palliative and hospice care is at the diagnosis - with the understanding that it’s not just for the patient, but also for the family and caregivers. 

2.Plan: Discuss, draft and agree on an end-of-life care plan that includes and honors the patient’s wishes.

3.Communicate: Make sure everyone understands the patient’s wishes so you will have a path to follow and you know how you will manage your loved one’s care and needs.

Learn more about advance directives and how to start a conversation by using these tools: https://www.caredimensions.org/where-do-i-start/planning-ahead/.  Or learn about our palliative care services here.

Davita Nowland is a long-time supporter of Care Dimensions. Davita delivered the remarks at our  23^rd Annual Hospice Regatta Dinner Auction and our 25th Annual Hospice Regatta on June 16, 2019.