Educate social workers about pain and grief
Social workers can play role in pain management
While nurses and physicians have their roles to play in palliative care of dying patients, social workers also have a responsibility for assisting in pain management, experts say.
Social workers need to know more about pain and palliative care because of hospice work as well as work in hospitals that often includes care for people who have life-threatening illnesses, says Terry Altilio, LMSW, social work coordinator in the department of pain medicine and palliative care at Beth Israel Medical Center in New York City.
"Most people see pain as involving physical symptoms, but pain can be very complicated, and so it's not only a physical event," she says. "It has emotions attached to it and thoughts and beliefs and expectations that can be very distressing to patients and families."
Part of a social worker's role is to look at human beings from a multidimensional perspective, Altilio notes.
"When somebody is experiencing serious pain or other symptoms, it becomes important in addition to treating the physical aspect to understand what the symbolism of those symptoms are in their lives," she explains. "For some, it's a physical experience; for some, it's redemptive; and for some, it's a sign of abandonment by God."
So it's important to look at the emotions and beliefs that surround the experience of pain when someone has a life-threatening illness, Altilio points out.
This perspective is an easy one for social workers to adapt since they are trained to look at multidimensional care, she says.
"I teach social workers to extend their skills to pain and symptom management," Altilio says.
Social workers also can be instrumental in helping patients alleviate pain and suffering through cognitive behavioral interventions, including relaxation techniques, she explains.
Social justice is another aspect of pain management, Altilio notes.
"Pain is undertreated in minorities and the elderly and in women, so there are social justice issues that pervade this topic," she says.
Also, political issues, minority health care issues, and many other aspects of pain management make it an amazingly rich topic for social work clinicians, Altilio says.
It's important to note that a patient can have pain, but not have suffering, and vice versa, she says.
"You can have pain from running a marathon, and it's not attached to suffering; it's attached to celebration," Altilio continues.
Alternately, a patient who is in hospice care because of a chronic lung disease or some other illnesses might not experience any pain but does have suffering because of the loss of freedom, mobility, and the prospect of death, she explains.
Dying patients can experience depression and anxiety without experiencing pain, Altilio notes.
"You can have depression that is a consequence of out-of-control pain," she says. "Sometimes, if you manage a patient's pain well enough, the patient's mood improves enormously, and the patient is able to sleep and engage in the world in a different way."
Other times, end-of-life patients who have psychological symptoms may need to be treated with antidepressants or other medication, Altilio says.
Another symptom that can be problematic is delirium, because end-of-life patients can become delirious for a variety of reasons, she says.
"It robs people of the quality of life they could have together in the setting of a serious illness," Altilio explains. "Some deliriums are treatable, and some are not, and some are part of the dying process."
It's very important to help patients who have delirium return to a more normal cognitive state so they can be in touch with their families in a way that is meaningful for them, she adds.
Relaxation techniques and other cognitive behavioral interventions may help patients cope with pain, Altilio says. "Cognitive behavioral interventions are designed to intervene in the relationship between mind, body, and your emotions. There are many different areas of living that are wonderful demonstrations of the relationship between emotions, mind, and body, and one of those is fear. If you can conjure up a fearful thought in your mind, then you can create a physiological reaction," she continues.
Health care providers can help a person who is in pain learn to change their thoughts and experience of that pain through such methods as hypnosis, Altilio explains.
"You use interventions and techniques they are most able to accept and try to teach it to them and help them understand it in a way that makes sense to them," she says. "You can tap into people's ability to use their mind and emotions because it can influence how they experience their body and pain."
Another area of end-of-life care in which social workers can help involves grief and psychological symptoms.
Very few medical professionals have received training in differentiating grief from depression, says Mary Raymer, MSW, ACSW, president of Raymer Psychotherapy and Consultation Services in Acme, MI. "So often a patient's receiving treatment for depression when the person is grieving normally, or vice versa," she says.
There are many differences, but the biggest is that in depression, the symptomology is persistent and pervasive; and in grief, the symptoms waxes and wanes, Raymer says.
"A person may experience a heavy bout of sadness and then something will lift him up, and he starts to feel good, and then something will hit him, and he feels sadness again," she explains. "In depression, the heaviness is persistent and pervasive."
Also, self-destructive thoughts are transient in people who are grieving, but again, are pervasive in those who are experiencing depression, adds Raymer.
"Someone can be happy, but not successfully if depressed, and closeness with other people is reassuring when someone is grieving," she says. "When someone is depressed, he tends to isolate from others."
People who are grieving do not need psycho-therapy, but they do need validation, Raymer notes. "They need people who believe in their ability; they need connectedness, and particularly for the social work role, people need good information and education that is accurate about what grief is and suggestions of healthy changes that will help them cope with the grief," she explains.
"For depressed patients, social workers need to screen them for the type of depression and assist in providing an appropriate treatment so the person can begin to grieve, because when you're depressed, you can't grieve," Raymer adds.
While there are many known strategies for helping hospice patients and their families cope with grief, social workers and other hospice staff are less well versed in how to help children cope with grief when someone they love is dying in hospice care, says Amanda L. Sutton, LCSW, senior program coordinator for CancerCare of New York City.
"Kids talk in their own language, and it's our role to speak with them in a language they speak in," she says. "We do this in play, activities, art, or music."
It's not the same as when hospice staff work with adults and let them sit in silence as the social worker or hospice staff wait for the person to speak about what concerns them, Sutton notes.
And it's not necessary for hospice providers to pretend to be cool when they're working with teenagers, because what the teens need most is to see the provider as a consistent adult in their lives, she says.
Here are some practical suggestions for helping children and teenagers cope with grief:
- "If the parent or another loved one is dying, kids can be involved in the process as far as how their lives are going to be changed, such as who is going to take them to school," Sutton says. "They can make decisions like that."
It's important to give children age-appropriate responsibilities, but to not burden them with too much responsibility where they might feel overwhelmed or inadequate, she adds.
- Also, the parents often are so identified with being parents that if they are dying, they'll want to cram in their parenting at the end, Sutton says.
"But be sensitive to the fact that the child can only do so much," she advises. "So have the parents express themselves in a way that's titrated for the child, such as doing some videotaping or letter writing over a period of time."
- Educate parents about normal developmental problems vs. situations intensified by grief, Sutton says.
For example, a child might skip school because he is afraid that if he leaves his parent at home then the parent will die, she explains. "So the child is truant not because he is a bad kid, but because he's trying to preserve that parent's life. We tell parents what's going on with the child so they'll understand why the child is acting the way he's acting."