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Since February is considered “heart month” and this is Valentine’s Week, many of us consider this time of the year to be the month of love. As such, my late husband asked me to marry him one cold February evening, so I felt it was an appropriate time to share part of my personal hospice story.

I will never forget the morning of September 17, 2001. My husband was in the hospital. He had been diagnosed in March of that year with an atypically aggressive cancer, and despite treatments, he was getting worse instead of better. We had been there for 10 very long days, fighting weakness, nausea, and vomiting. I was finally told I could take him home. When the nurse asked which hospice I wanted to use, I remember just standing there looking at her. I did not have a clue. I am sure at that time in my life, I had the mind frame that so many do, and that is, “hospice is hospice.” I had no idea that it would even matter which one I chose. I remember thinking, “Weren’t they all the same?” I have learned much since that day and realized that yes, it absolutely matters.

There are many things that are the same: Regulations, guidelines, services offered (nursing, chaplain, social worker, aides, etc), and philosophy. The things that are not the same are just as important. My thought now is the location of the hospice agency and staff in relation to where the patient lives is crucial. When you most need your hospice team, in the middle of the night on a holiday, where are they coming from to see you? Response time is crucial when you are experiencing an emergency with your loved one.

The hospice team’s passion for their work will reflect upon the care your loved one receives. I also believe, because of my experiences with my husband, that it is better to have hospice sooner than later. Incidentally, September 17, 2001, was not only my first encounter with hospice, but it was also our 30th wedding anniversary and the day I took my husband home with hospice. When I said, “Look, baby, we are home,” he smiled for the first time in weeks. Unfortunately, we were not given the choice of hospice until the very end, after months of no improvement with treatment. As I later told my husband’s oncologist, we needed it months before we were given the option. If I could have changed anything other than not having this happen to my husband at all, it would have been to have hospice sooner. It would have been much better for all of us to have spent the last months living and loving instead of the weariness of coming and going, in and out of the ER, doctor’s offices, and hospitals. Because there was no cure for his disease – the outcome would have been the same. I would have much rather spent those last months at home with our family and friends.

In thinking about that time in my life, I realize that we are essentially who we are because of the experiences in our lives. Sometimes, the most difficult times make us grow, gain compassion and empathy, and find a strength we never knew we had. I have changed much throughout my life; every day we are given is an opportunity to grow, become a better person, and help others. I am sure there are still many lessons ahead for me, and I will try my best to allow all of them to shape me and make me more kind, open, forgiving, and genuinely empathetic to those around me, for I know that not one of us has the promise of tomorrow. It is because of my experience with hospice that I am a hospice advocate.

For many years, I have worked hard to offer hospice education to medical professionals and educate the public on the services and benefits of hospice. When a patient has an advanced life-limiting illness/disease and curative measures have not proved effective, hospice employees work with the physicians, the hospitals, the nursing homes, and the assisted living facilities to ensure patients and families needing hospice are aware of the hospice philosophy, benefits and services available to them for end-of-life care. Hospice is more than “end-of-life” care; it is about celebrating and honoring life.

When we receive a call from a patient or family member asking about hospice, we consider it a privilege to speak with them about the benefits, services, and criteria. However, before we can evaluate or admit a patient, we must have an order from their physician permitting us to do so.

Most often, it is better for the patient or family member to initiate the call with the physician to request an order for an evaluation, then the physician or his office staff will send the hospice office a referral for evaluation and admission if the physician feels the patient may meet the established Medicare criteria.

Please feel free to call me or the hospice of your choice if you have questions concerning the services, benefits, and criteria for hospice admission. More importantly, speak to your physician if you or your loved one has an advanced terminal illness/disease and wish to change your focus from curative measures to palliative measures (pain and symptom control). Hospice focuses on comfort, not curing, and making every day with your loved ones the best it can be.

As Lisa Teel, my dear friend, mentor, and co-worker, said many years ago, “Vickie, we may not be able to change the outcome, but we can certainly change the journey.”

— Vickie C. Wacaster is a Patient and Hospice Advocate for Aveanna Hospice (formerly Comfort Care Hospice).