Dear Barbara, What is the best way to explain to families/caregivers the “why” behind end of life daily visits? How can I help my nurses increase their compliance visits when they report family refuses visits?

An interesting question. I find it hard to imagine families refusing visits. Most are so frightened of the responsibility of caring for someone as end of life approaches they’d move the nurse in with them if they could. So why are they refusing visits?

My first thought is do you have primary care nursing–one nurse per family? There is a big difference between having a “stranger” arrive, who you don’t know or trust, and a nurse who has developed a rapport with the family.  As death draws closer it is scary, exhaustive times for the family. If they see your staff visits as intrusive rather than informative and supportive I can see why they would refuse a visit. Obviously this is NOT your intent but I would have a staff meeting and talk about your concern.

Another thought: has the prior teaching to the family gotten them to the place where they know their loved one is days from death and that your support and guidance will help them during this special time?

Does the Caregiver/family understand how close death is? 

I’d also just ask the family “Why don’t you want me to come back?” “I’d like to come tomorrow to see how John is doing.” “If he has changed, where he is in his labor to leave this world.” “You know we’re as close as the phone, day or night, but it can help us both if I visit tomorrow to assess John and guide you in the next few days.” Being direct, yet gentle, builds relationships and prevents misunderstandings. (And be sure to chart their answers).

In end of life work the death is the goal. We don’t hasten death but we lead and guide those present to an understanding that death is going to happen and we teach how dying will unfold. We teach that taking care of someone as the end of life approaches is different than taking care of someone who is going to get better. We teach, we support and we guide the family/caregivers through this experience. Our goal is to help create a sacred experience for those present so that they will have a sacred memory to carry with them in their Grief. 

End of life work is less about the medical and more about the emotional, communal aspects of living and dying. Our presence, our contact, our being there is a HUGE part of the care we provide. Our presence is more important than our words or the blood pressure we take BUT that presence needs to be developed and built through all of our visits. Now I’m back to primary care nursing, primary care social worker, primacy care Home Health aide. 

It’s hard to trust strangers, even if they are coming from an agency (maybe because we are coming from an agency).  We, the hospice team, have to work harder to build those relationships and trust. We certainly don’t want families to not want us there. It is a sign that something is amiss and I applaud your wanting to find out why.

Something More about… Why Would A Family Refuse Weekly Hospice Visits?

When a family sits with their hospice social worker, nurse or chaplain and reads my short booklet GONE FROM MY SIGHT: The Dying Experience, a light bulb goes off.  They see that yes, their loved one has the signs of approaching death that the booklet explains.  Hospice can then do their best work of supporting and helping to orchestrate a sacred dying experience.  GONE FROM MY SIGHT comes in 12 different languages for better understanding for those whose first language isn’t english.  It is also a part of the bundle End of Life Guideline Series

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Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.