We all know etiquette for weddings, and I have written about etiquette at funerals and for visiting patients in the hospital. But no one writes about visiting a family member or friend in hospice care.
In the late 1960s Dr. Elisabeth Kübler-Ross, a psychologist in Chicago, spoke about the stages of death and dying—denial, anger, bargaining, acceptance, and hope. This concept became embedded into the psychological and medical literature and opened the doors to talk about the dying process. We now know that these stages are neither accurate nor predictable. The concepts are not clinically useful, but they were a starting point to make us aware of what emotions some patients may experience.
At about that same time, St. Christopher’s hospice opened in London. This was a facility for patients who were in the dying process. The focus was on quality of life and state of well-being. Medical interventions that were not in alignment with the goal of quality of life and well-being were not part of the treatment plan.
This philosophy of caring now has a global perspective. We call it hospice. And every community has some dimension of the hospice intervention.
In general, there are two types of hospices: a physical facility, either a standalone “hospice house” or floor of a hospital (where I saw hospice patients for decades at Mayo Clinic) or a home-based program where the patient is cared for in their own homes by their family and caregivers.
At some point in our lives, almost every one of us will have the opportunity to visit a patient under hospice care. Here are some ground rules:
If you are visiting a patient in a hospital following routine surgery where the recovery is expected and the complications are not expected, you certainly can be somewhat light-hearted and optimistic. And you can reassure the patient that once the discomfort of the surgery is over, the patient’s quality of life will improve: “Jim, you’re really looking great for having gone through a major operation.” “Let’s have lunch when you get back to work.”
By contrast, when visiting a patient in hospice, the rules are different. By definition, a patient in hospice care would have life expectancy of approximately six months or less if the disease runs its usual course. This means that the patient is actively dying, so you need to be respectful of the entire process.
“How are you feeling?” “How are things going?” is certainly a sensible way to start the visit. This is not the time to tell the patient how great they look because, in fact, they are not looking great. They’re dying.
Patients have limited energy and limited stamina, so limit the time of your visit. Minutes, generally, not hours. If the patient is nodding off or actively sleeping, make a quiet and graceful exit.
The hospice, whether a facility or the patient’s home, is a sacred place. The visit should be on the patient’s schedule, not on yours. Call ahead and let the caregiver (usually a family member at home or the nursing staff in a hospital hospice) tell you the best time to come (if at all). This is not the time to bring cookies or candy and discuss some controversial political situation.
If the timing is right, this certainly would be the appropriate opportunity to acknowledge the heroism and the courage of the patient and the family and to reassure them that they have left no stone unturned: “I admire your courage. You have asked all the right medical questions.” “You have made the tough decisions with this disease.” No need to look back or rehash past transgressions.
Reassure the patient that the visit is limited: “Just wanted to stop by and say hello.” Don’t settle in or sit on the bed. Judge by the situation whether you should stay longer or give the caregiver at the bedside a break (to shower or nap, for example). Ask the patient and family caregiver, “Is there anything I can get for you?” “What can I do for you?” Be prepared to act on any reasonable request (a favorite food, a magazine, a cup of tea, ice the water, prop the pillows, cover with a blanket, take the dog for a walk).
At times like this, if appropriate, just show up or respect the family’s and the patient’s privacy (send a card or a text instead; have a meal delivered to the home; send flowers with a thoughtful note, “Thinking of you”). This underscores the power of presence, the power of being available, the power to simply listen. This is the greatest gift that we can give someone you know who is going through that final of life’s chapters.