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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What can a family do when there is no rapport with the nurse assigned to us? We almost dread her visits.
The first two nurses we had were lovely, but one was a subcontractor no longer working with Hospice and the other one got her "dream job’ in a hospital.
I am very intimidated by the one that comes now, and she knows it. The whole experience is so medical and we are holistic people. It is not a match and yet I feel powerless to communicate who we are in the face of my husband’s need for help. We fight almost every time she comes.
I can tell you why I didn’t want weekly hospice visits at the beginning. In the first week or so, three different people came to our house, and I had to spend an hour or so going through all of my husband’s medical history and everything else they wanted to know, with each one. Then there was the delivery of medical equipment, and another delivery of prescription drugs. It was exhausting. Also, we were both old and tired and unwell, and it seemed that the hospice visits were scheduled for their convenience, and not really to meet our needs. As the need got greater, the visits did increase. But you have to remember that these people are strangers to the patient and their family. It’s not always comfortable for people to have strangers in their home. We also happened to need hospice care at the height of the pandemic, so having people in and out of our home did not seem safe. I personally knew a family where the patient and the caregiver did catch COVID from hospice staff, so it was a realistic concern. Our reluctance to have weekly visits had nothing to do with not accepting the situation, as both of us had known for a long time that my husband’s condition was terminal. But sometimes the visits seemed more like an intrusion into an already difficult situation, rather than a help.
(The title talks about weekly visits, but the article talks more about daily visits.)
I cannot say enough good words about the two Hospice Teams that supported my mother and my siblings during her end of life. The Gone From My Sight booklet was an incredible aid to our family, especially for my sister, who had been the caregiver for years. My sisters and I read the booklet and realized our mother had already begun her end of life journey a couple of months before we moved her into a wonderful Senior residential facility. The beauty of her passing is that we were by her bedside as our mother peacefully transitioned.
I can’t imagine any family refusing to have a visit with a Hospice Team. I would have been lost without my supportive team. My dying husband loved seeing them right up until he didn’t know who was here.
Your books have helped me so much and I give them out to anyone I know who is in the position of being with a dying person.
Thank you for all you do. My husband died in 2012 at the end of this month. My grief counselor still checks in on me.
And no matter how much education and support you have offered- some families are still afraid you are going to giving their loved one “too much” pain medication. Their loved one won’t be able to respond to them, this always baffles me. We have to gently explain that it is about the patient’s journey at this point. We want them as comfortable as possible. If you have things to say, hold their hand. Whisper in their ear. Let them know its ok to move on. They will hear you. But the family has to be satisfied that the patient hears them. The time for back & forth dialogue has probably expired
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BK Books replied:
Hi Marci, thank you for sharing. I agree, in spite of all our teaching sometimes it falls on deaf ears AND we have to just keep teaching. Blessings to you in the work you are doing. Barbara
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