Provide meaning to patients referred at end-of-life

Gentle words, life validation make a difference

Hospices are increasingly referred patients who are within days or hours of dying, making it much more challenging to provide meaningful services and end-of-life opportunities for resolution.

However, there still is a way for hospice social workers, bereavement counselors, and others to reach dying patients, even when they are nonresponsive.

"We have a great many patients who come to hospice late and average a length-of-stay of maybe two or three days," says Kevin Henry, MEd, MSW, bereavement care counselor and counselor for Forbes Hospice in Pittsburgh, PA. Henry spoke about life validation with the minimally-responsive end-of-life patient at the National Hospice & Palliative Care Organization (NHPCO) conference, held July 30 through Aug. 1, 2007, in Albuquerque, NM. It was titled, "Caring for Mind, Body, and Spirit: Psychosocial, Bereavement & Spiritual Needs at End-of-Life."

"Many of these patients are minimally responsive," Henry says. "They receive exquisite physical care and pain management and other traditional hospice services."

But what they might lack is validation, having someone tell them that their lives were meaningful, he says.

Many hospice professionals suspect that the minimally-responsive patients are still able to hear what others say, Henry notes.

"There's no research to back this up because people don't do research on language processing of people on their death bed — it's too intrusive," he says. "However, there is enough anecdotal evidence among those of us who do this work to suggest that they are hearing everything that is going on."

Exceptions would be people with brain stem disorders and hearing impairments, Henry notes.

Dying patients often want to know, even when they can't express it, whether their lives made a difference and that they have left a legacy for others, Henry says.

"And there's no reason why people who are minimally responsive cannot be reassured that it is so," he adds.

This is why Henry has made it his mission to provide end-of-life patents with a compassionate voice and loving tone that validates who they are and how they will be remembered.

Henry provides these suggestions for how this validation can be provided to minimally-responsive patients:

  • Find out what you can about the patient from his or her family.
    Hospice professionals can ask family members about the patient's life, including both happy moments and struggles.
    "You always look for the strengths and what's good and beautiful about the person," Henry says.
    "I always ask a few pointed questions of the family members, and then I reflect that information to the patient," Henry says.
    Once the social worker or other hospice professional has this information, he or she can sit at the patient's bedside and introduce him or herself.
    "You can say, 'I'm aware this not a time when you are able to talk with me, but with your permission, I'd like to talk with you,'" Henry says. "'If it makes you uncomfortable in any way, please let me know by throwing back your hand.'"
    Henry will continue to speak to the patient: "'If you're okay with me being here, then let me tell you what a pleasure it is to have this time with you. I'll tell you what my role is as one of the counselors here. I just want to let you know some of the things I know about you from your family members.'"
    The one-sided conversation might continue in this way: "I've been learning from your family that you are a dynamite mother, and there are people in this room who love you more than words can tell. I know you have a terrific sense of humor and always put others at ease," Henry says. "I know you are the one in the family who was the standard for honesty."
    The patients' strengths can be reflected during this validation.
    Also, when the hospice social worker or other professional takes 10-15 minutes to speak with the minimally-responsive patient in this way, then it encourages the family to also speak to the patient, Henry notes.
    "That's the most gratifying thing for me," Henry says. "My work is all about trying to make conversation happen that might not otherwise occur."
  • Go by intuition when speaking with patient who has no family available.
    When Henry sits with a patient who is alone, and there is no information available about this person's life, he will follow his intuition based on the person's face and generalities about every person's life.
    Everyone weathers struggles and known joy, and as they are dying they have reached a point where the struggling is coming to a close, Henry notes.
    "I will speak about the human condition and impressions I have about people based on their face," he says. "Some people strike you in certain ways."
    For instance, he met with one dying woman whose family could not be contacted.
    "I knew her life was advanced, and she probably had joy and reflection and moments of peace," Henry says. "I told her that she had one of the most kind faces I had ever seen, and I said, 'Yours is a face that shows great kindness.'"
    On the day she died, hospice staff finally reached the woman's brother-in-law, who told Henry that the woman was one of the kindest persons he'd ever met.
    "So his impression in knowing her awhile was exactly what I found with just seeing her face on her death bed," Henry says. "We hospice workers are pretty astute folks, and we work with people day-in, day-out on poignant issues, so we have a way of knowing people, and we can make good educated guesses."
    If a hospice professional speaks with a dying patient in a soft, unhurried way, and reflects on that person's strengths and legacy, and the professional is a little perceptive, then he or she will probably be very close at guessing what the person's life has been like, Henry says.
    "I might say, 'I don't know you very well, but I imagine your life is one with joys and tribulations, and you probably know much about loving and getting by in tight spots,'" Henry says. "I say, 'You are to be congratulated for living as long as you have.'"
  • Be gentle in speaking with the minimally-responsive patient.
    What the patients recognize is that someone is sitting beside them and is talking with them gently and lovingly, Henry says.
    Sometimes as people are dying, their rate of breathing will increase while someone is talking with them, and then it will slow into a steady and rhythmical pace, Henry notes.
    "One of the helpful things is to watch people's breathing, and kind of give short phrases with their out-breath because there's music to people's rate of breathing," Henry says. "It's literally the music of the human body, and you might say 'soul.'"
    Henry will start to pace his phrases and sentences with the patient's out-breath, using the patient's rhythm as a guide.
    "When people are breathing rapidly, I might try to speak to them with every other breath," he says. "Or if they are breathing slowly, then I might say two sentences with each of their breaths."
    It's important to not underestimate the importance of physical presence and touch.
    "Another pointer is that people's lives are a gigantic experience of sensate things," Henry says. "People are touching things all the time."
    So Henry will hold a patient's hand and maybe discuss the way the person has used his or her hands in the past.
    For example, a person who was a secretary or writer might have touched many keyboards or typewriters, and someone who was a mechanic might have used various tools, Henry says.
    "For cooks, I'd talk about the feel of food that they were handling and the pots and pans," he adds.
    The key is to read into people's lives what their own experiences were and recognizing what they have touched along the way and how that has impacted them.
    This gentle validation often gives the patient the release he or she needs.
    "It's not uncommon for people to shed a tear and to die not long afterwards," he says. "Sometimes people make a decision and think this is as good a time as any to leave because someone knows who they are and is talking lovingly to them about their life."