A Family Caught Off Guard

I recently got a call from a caregiver that his wife in a nursing home was non-responsive. He sounded scared and didn’t have a lot of information. He had received the call from the nursing home telling him his wife was non-responsive, had a fever and they thought, maybe it was pneumonia. They were asking if he wanted her to be sent to the hospital. He was scared and didn’t know what to do.

Here is some background. The wife had been in memory care for about 4-5 years. She had dementia and her condition had been declining. The couple had an Advanced Medical Directive and had discussed what a “good life” meant. She did not want any lifesaving efforts if she was not to have what she described as her best life. Her dementia had already robbed her of any physical abilities and most of her memories. She was no longer able to converse and barely recognized her family anymore.

I began by asking questions and here is what I discovered:

She had not been eating for a couple of weeks. The Dr. had not seen her that evening or called the husband. Hospice had not been called. The husband did not know anything about hospice care, if they had been called, that a Dr. needed to order it. He had not been advised by anyone at the nursing home to consider hospice prior to this event.

We talked through what the Advanced Medical Directive meant in terms of sending her to the hospital or receiving any lifesaving medications. He told me she did not want that. I advised him to consult with the Dr. on call. The nurses had not called the Dr. He left after our call with his children to go be by her side. She died within the hour.

There are several things in this situation that surprise me. Why hospice had not been advised when the wife had stopped eating and was losing weight, I do not understand. According to the husband, her condition had been deteriorating for a couple of months. Why the Dr. on call had not seen the patient and called the husband, I do not understand. It was not clear to me if the nurse who called was a RN or a nursing assistant, or the Director of Nursing.

I am not making any assumptions about the facility or the quality of care. I just want to point out the communication gaps and the effects on the family.

The Ripple Effects of Delayed Action

What saddens me and causes me to write this blog, is that without hospice, this family was robbed of days with their loved one. If hospice had been called in sooner, they would have had time to say their goodbyes. It is not the fault of the husband, I know him and believe if he had been advised by a Dr. to call hospice, he would have done so. What also distresses me is what seems to be a lack of knowledge of the nursing staff on service at that time, that they did not recognize her deteriorating condition enough to have called sooner. And, most of all, there was no support for the family in a very difficult time. They were left with the death of their parent and wife without any bereavement support or counseling from hospice. I discovered in my follow up that they were all in a state of shock that she went so quickly.

Understanding Hospice: Dispelling the Myths

Hospice is cloaked in myths. The word itself makes people cringe because they connotate it with giving up on someone. All of this prevents people, and, it seems, some organizations, from recommending hospice. The hospice mission is quite simple: Quality and comfort at the end of life.

This often means eliminating some drugs that can be causing discomfort or are no longer necessary during someone’s last months. It can also mean administering small doses of morphine to keep someone comfortable during their final days and hours. There are a lot of misunderstandings about this. It also means that any “curative” or life saving measures are suspended. The family always has the option to drop out of hospice care should they decide to employ curative measures, even if it is for a short term.

A Dr. must approve hospice care with the diagnosis that the patient has 6 months or less to live. Should the patient live beyond that period, the Dr. can re-enroll the patient.

I hear too many stories of no hospice care or hospice called in at the last minute. Hospice is most effective when they are called in upon the recommendation of the Dr. Many families will ignore this recommendation because of how it makes them feel. Having hospice care when it is advised by a Dr. can mean the difference in comfort for the patient and time for the family. Hospice provides support for the family during the last months. Hospice nurses, chaplain, even volunteers are all a team to support both the patient and the family.

A Personal Testament

I experienced hospice care with both of my parents. It was the support they needed and the support I needed. The hospice nurses are so well qualified to support the patient and the family. When my father was dying hospice found a volunteer to visit with him a couple times a week. My father had served in the Army in WWII and the volunteer was retired military. They become good friends over the months, and he came to memorial services.

When my mother was in hospice care during the last months of her life, I talked frequently with the two nurses who came to see her every week. I did not want things sugar coated about her dying and they were forthcoming with me. Hospice is there at the end with you and the bereavement counselors support after the death.  I received calls after the death of my father from the bereavement counselor.

A Call to Action

Don’t let fear or misconceptions rob you of precious final moments with your loved ones. Educate yourself about hospice care today – it could make all the difference tomorrow. Remember, hospice isn’t about giving up hope; it’s about redefining it. It’s about ensuring that every remaining moment is filled with comfort, dignity, empathy and love.

By embracing hospice care early, we can transform the end-of-life journey from a time of crisis to one of meaningful connection and peaceful transition. Let’s break the silence and start these crucial conversations now, before it’s too late.