When Words Are Not Enough: Helping Families With Grief
Published on the 14 June 2015
Published on the 14 June 2015
Grief is one of the most difficult parts of the nursing profession. It is awkward, sad, and sometimes shocking. Dr Kriss A. Kevorkian is an expert in grief and dying, holding a doctorate in thanatology—or the study of death. She recalls the memory of one hospice patient that has stayed with her through the years.
“I had a hospice patient who was an older woman dying from lung cancer. She had a loving family around her with a granddaughter always at the ready to help. One day the nurse and I were called to her home by her daughter stating that her mother died. We arrived and found our patient awake and alert. According to our patient, ‘I wanted to test the waters.’”
Although this was scary for the family members, they never left the patient’s side and always maintained a loving, supportive atmosphere. Eventually, the patient died, and when Dr. Kriss arrived, she was surprised at what she saw. “This time we found her dead, family around her bed, and her granddaughter painting her toenails. There was love, joy and sadness around that bed.”
What made the granddaughter paint her grandmother’s toenails? What did it matter? Weren’t there other things she could be doing at that crucial time? No. She was expressing her grief the way she felt she should. There is no wrong way to express grief, and that is something nurses, patients, and family members sometimes fail to remember or accept.
Elisabeth Kubler-Ross was a Swiss psychologist who wrote a landmark book called On Death and Dying in 1969. This book outlines the five stages of grief as denial, anger, bargaining, depression, and acceptance. Her paradigm is standard teaching for all healthcare providers who are expected to come in contact with grieving families and dying patients. Nurses are taught the five stages of grief, but they are largely false and have even been discredited by Dr. Kubler-Ross herself.
Kubler-Ross opens On Grief and Grieving by describing how the five stages have been taking out of context: “The stages have evolved since their introduction, and they have been very misunderstood over the past three decades. They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grief is as individual as our lives. Not everyone goes through all of them or goes in a prescribed order.”1
Debbra Gossen, a nationally-certified grief management specialist, believes the reason that the five stages of grief have been taken out of context is that they offer an easy solution. But in grief there are no easy solutions. As she says, “Grief is not a set of phases in an organized process. Grief shuffles, back and forth. There are as many ways to grieve as people who are grieving. It is not a set path.”
In addition, Kubler-Ross’ methods of developing the stages were less than scientific. In On Death and Dying, she explains her methods: “How do you do research on dying when the data is so impossible to get? When you cannot verify your data and cannot set up experiments? We [Elizabeth and her students] met for a while and decided that the best possible way we could study death and dying was by asking terminally ill patients to be our teachers.[…] I was to do the interview while they [her students] stood around the bed watching and observing. We would then retire to my office and discuss our own reactions and the patient’s response. We believed that by doing many interviews like this we would get a feeling for the terminally ill and their needs which in turn we were ready to gratify if possible.”2
These stages were created without the scientific method. There were no large sample sizes, no double-blind testing, and no concern for repeatable findings. What Kubler-Ross did was start the discussion on dying, but her findings are by no means definitive, and, unfortunately, are largely anecdotal. This is what nurses are taught to look for when dealing with death and dying, and they really aren’t very helpful. Is it any wonder that most nurses feel uncomfortable with a family who has just experienced a loss?
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If Kubler-Ross’ five stages of grief are not the way to teach nurses and healthcare providers how to deal with grieving families, then what is the best way to teach this difficult concept? Doctor Susan Waltz, RN of the Chamberlain College of Nursing, has taught many nurses about how to deal with family members during the crisis of loss. Dr. Waltz states, “Role playing is helpful in teaching nurses to cope with the unusual circumstances grief can expose. We go through with them the experiences they are likely to encounter. We let the students share their personal death experiences. We help them prepare for what they are likely to see, what they are not likely to see. That is the way we try to teach grief to students.”
Role playing seems to be the best way to overcome this difficult situation. It can be terrifying and awkward for a nurse to encounter family members who are screaming, throwing things in anger, or curling up in the bed next to their deceased loved one. The shock of seeing this wide range of behaviors can be unsettling for a nurse, who likely just wants to avoid the tension in the room. Giving nurses a chance to practice responding to these situations and discussing their experiences can help overcome the discomfort of entering into these moments. As nurses, this is exactly the moment to step up and help. This is when nurses need to shine.
In the Western culture, we are surrounded by clichés that we are told will help to comfort those who are grieving. Learning how to communicate with a dying person and their family is an essential nursing skill. Claire M. Schwartz is the author of Putting Out the Fire; Nurturing Mind, Body & Spirit in the First Week of Loss, which looks at the first hours and days after the loss of a loved one, and describes her personal journey of how she overcame her mother’s loss. In this book she states, “This is exactly why I wrote the Ten Tall Tales of Grief & Loss™. So many people want to be helpful, especially nurses, but we can end up saying the wrong thing, just repeating cultural phrases we have been taught. But these can actually be very hurtful, especially in those raw moments right after a death.”
In fact, in Schwartz’s book, she details a number of phrases that are not helpful in a time of grieving. For instance, ‘Time heals all wounds’. This really isn’t true, because people can feel grief for years after a loss unless they actively work at healing during that time. Another that is particularly harmful is, ’I know what you are going through’. You do not. Even if you lost your mother to cancer and the family member lost their mother to cancer, you have no idea what they are going through. It is a different person, a different relationship, and a different way of experiencing the grief. Encouraging the griever to keep busy, allowing for extended isolation, emphasizing how the griever should feel, and advocating getting ‘over it’ are similarly unhelpful phrases in any part of the grieving process. The old normal does not exist, and many grievers have to establish a new normal without their loved one; a process that will go on for years after they are out of your care.3
Jo Rinck, who is a grief specialist at Anthem Health Insurance here in Australia, sees nursing for people who are experiencing grief as a change from the nurse’s usual role: “Nurses are taught to evaluate and fix problems, and at this point there is no fixing the problem. This helplessness makes nurses uncomfortable.”
Knowing exactly what you shouldn’t do may seem like an impossible task as a healthcare provider. Even when you try to do your best, you may inadvertently hurt a grieving family member, and they will remember that. It is great to know what not to do, but knowing what is acceptable is the last piece of the puzzle.
It is a difficult time, but you can take steps as a nurse to help families who have just suffered a loss. Instead of using clichés, use your heart, your feelings, and your presence to offer comforting care.
Grief can be expressed in surprising and unexpected ways. Grief Counselor Schwartz says, “Don’t assume. Don’t judge. You don’t know the person. Some may laugh as a stress relief. It is not because they find it funny, but they are getting the emotional tension out because holding it back is impossible.”
She continues, “Compassion goes a long way. You can say, ‘I’m so sorry,’ or ‘I can’t imagine what you are going through.’ But it is also important to offer actual assistance. The staff has to be clear on what your hospital has available by ways of support. Clergy; social workers; pamphlets and books on grieving; and answering medical questions are all important options to offer the grieving. Some want to know, and some do not. Some want to understand, trying to wrap their head around the reality, others may find the facts overwhelming. And you might not always get an answer. Offer, but don’t assume what that particular family needs. The biggest thing is to listen. Listening and asking questions 80 percent of the time is the goal.”
Sometimes, you don’t even need to be asking questions; just your calm presence can be enough. Silence can offer space for those who are grieving to express themselves in their own time, or to process their emotions without having to explain themselves. Dr Waltz advises, “Just being in silence is the best thing. You don’t need to say anything. Let the family start experiencing their loss. You are in a supportive role more than anything. Shut the alarms off, and give the family their privacy. Close the door, pull the curtain. Give the family their space.”
As in most nursing situations, nonjudgmental compassion for the patient’s family is key to helping the newly grieving. It can be particularly hard on staff and family when the death is sudden, but that doesn’t mean there will be no grief over a hospice patient. Be a receptacle, a person who doesn’t have to do anything, but be there and listen. Nurse Gossen agrees, “Respect each individual. Each person will respond and react differently. Acknowledge their grief, accept without judgement, and embrace the actions they feel they need to do. Embrace each griever with the acceptance of what they are going through.”
Ultimately, nursing people who are experiencing grief is about being receptive and responsive to the patient’s needs. Dr Waltz makes these suggestions: “Watch for the signs and symptoms of depression and not dealing with grief. Advise that they seek a counselor or a minister, so they can continue to process their grief. […]Know that it is okay to cry as the nurse. It is difficult to deal with death or dying and to be told that you cannot cry. It is okay to cry in front of the family. We are human, and we did have a connection with that patient. A life has been lost.”
So little is taught in nursing school about helping families with grief, handling death, dying, and bereavement. Couple that with a cultural taboo against talking about death, and this important time can be mishandled. It is crucial to know what not to say and what not to do because you can end up causing harm; even in an attempt to be supportive. Instead, find ways to help grieving family members that accepts their grief and allows them to fully express themselves.
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Lynda is a registered nurse with three years experience on a busy surgical floor in a city hospital. She graduated with an Associates degree in Nursing from Mercyhurst College Northeast in 2007 and lives in Erie, Pennsylvania in the United States. In her work, she took care of patients post operatively from open heart surgery, immediately post-operatively from gastric bypass, gastric banding surgery and post abdominal surgery. She also dealt with patient populations that experienced active chest pain, congestive heart failure, end stage renal disease, uncontrolled diabetes and a variety of other chronic, mental and surgical conditions.