By choosing hospice sooner, you have more time to build relationships with people on your care team, share your concerns, and manage your symptoms.

What I Wish Every Patient Knew About Hospice

In the 11 years that I have been a hospice nurse, I have cared for patients in their homes and in nursing homes, assisted living facilities, and group homes. Each situation is different, but regardless of the setting or diagnosis, there is one thing I would want for each patient to know: the sooner you come on to hospice care, the sooner your hospice team can provide the services and benefits that can improve your quality of life.

The right time for hospice

I often have heard people say, “It’s too soon for hospice,” or “We’re not at that point yet.” There’s a commonly held misconception that hospice is only for the last few days of life and that we just come in to help people as they are actively dying.

The federal government sees it differently.  Medicare’s hospice regulations state that two doctors must agree that if the terminal illness runs its normal course, a potential hospice patient would be expected to live for six months or less. Medicare wants this specialized end-of-life care given to folks well before those last few days. (Most private insurance plans have followed Medicare’s lead and cover hospice care.)

People can receive hospice longer than six months if the disease continues to progress. The hospice team of nurses, chaplains, social workers, and doctors meets regularly to discuss people’s eligibility for hospice care.

This compassionate and expert team also can include hospice aides, volunteers, music therapists, massage therapists and pet visitors.  The hospice team provides services as part of your Medicare benefit. It can be a well-kept secret about Medicare! Why would you wait until the last few days to use these services?

You would be missing out on so many benefits. By choosing hospice sooner, you can build relationships with the people on your team. There is more opportunity to talk, share your concerns, manage symptoms, and find closure with loved ones. All these pieces can help lead to a peaceful death, which is our common goal.

A family’s two hospice experiences

I remember one patient named Tony. He and his wife had been living in the same nursing home. Before Tony came on to hospice, his wife had recently died. She did have hospice care, but only for the last two days of her life. Her daughters told me that they had no idea how much they needed the hospice team earlier. Like many family members of seriously ill patients, they assumed “It was not time yet.” After they met the hospice team and learned about all the benefits they could have had access to sooner for their mom, they made a promise to each other that when their dad started to decline they were going to get hospice involved early.

I met Tony while he was still of sound mind and could speak for himself. I made my nursing visits twice a week for months. I cared for several other people at this nursing home, so even if I was not scheduled to see Tony that day, I would talk to his daughters. I learned that Tony had cared for a huge rose garden at his home and that he made his own wine from the grapes he grew in his yard. It was such a friendly atmosphere each time I visited. I met his son, Anthony, whom his sister lovingly referred to as “The Young Prince.” He and I joked that as the youngest and only male he was supposed to be treated like royalty, but he was raised with three bossy, older sisters. I did not become friends with the family, but we did build a deep, friendly relationship.

Tony’s disease did progress, and I knew he was near end of life. I visited one day and found the family sitting vigil around his bed. Anthony jumped up to give me his seat. I tried to decline, telling him he should stay in the chair at his dad's bedside. None of them were going to have that. All four of Tony’s kids treated me as if I were the royal guest. They were so grateful for the care our team provided. Talking with the chaplain and the social worker had prepared them much better for the death of their father than they were for their mother.

Our aides were comfortable talking about death and dying, so it seemed so much more natural to Tony’s family and not something to fight. Tony did have a peaceful death. I was honored to be at his bedside with his family helping to make everything feel safe and comfortable. And I knew that our Bereavement Team would stay involved for another 13 months. It was a beautiful relationship I had with Tony and his family. I am so glad they chose hospice sooner for Tony than later.

I wish every person knew about this amazing hospice benefit. I wish that every family knew that it is not supposed to be something we save for the last few hours of life, but that they can have more time to build beautiful relationships with each of the members of our hospice team over a course of months. That we are here to help.

Learn more about hospice with Care Dimensions.

About the author

Mary Johnson, RN, has been a hospice nurse for 11 years and is a nurse clinical educator with Care Dimensions.