Why I wrote this booklet

January 19th, 2020 — By Youske Eto, LCSW

As a hospice social worker, I saw firsthand the gap between the multitude of significant psychosocial needs of loved ones of hospice patients and what is realistically possible for hospice teams to provide on their own to meet those needs.

Caregivers are having to deal with so many facets of the reality and finality of their loved one being admitted to hospice. These can include emotionally supporting the loved one deal with their situation, coping with their own grief and facing the fears of what the future holds, dealing with and planning for increasing care needs, coordinating with the care team, communicating with family and friends about what's happening, and making financial, legal, and funeral arrangements, just to name a few.

Typically, as a hospice social worker, I was able to visit patients only once or twice a month. During those visits, if the patient was having some issues, much of my attention would be focused on the patient, and I often would not have much time to address the needs of the loved ones, if at all. Even if I had a good conversation with patient’s family or friends about their grief, for example, and I was able to share some helpful information with them about the grief process, such information would usually be shared only once, while it would be very beneficial to be reminded of them again and again.

These are the reasons I wrote the booklet, A Companion on the Journey: Heart Advice for Loved Ones of Hospice Patients – to bridge this gap and help meet the real needs of the loved ones.

The booklet is quite comprehensive in scope, but I kept it concise because caregivers have very little time on their hands. I wrote it in an accessible style, like having a caring friend who guides and support you in a difficult time. I also spent a lot of time with my graphic designer to make sure that the booklet has an inspiring look, interspersed with beautiful color photos of the nature, including the cover, so it’s inviting for the caregivers to reach out for it when they sit down to take a break.

I truly believe that this booklet can be a game changer, not only for loved ones of hospice patients, but also for hospice teams. By preparing loved ones with the information, resources, and support provided in this booklet, it can transform how they engage and communicate with their hospice team and enable us, not only social workers, but also nurses, chaplains, CNAs, medical directors and others, to do deeper clinical work with them.

My sincere hope is that this booklet would not only help improve family satisfaction and quality of care, but also boost job satisfaction and morale of hospice teams everywhere.

— Youske Eto, LCSW