Bereavement outcomes measurement still a distant goal
Common sense still the best tool for program improvement
In many ways, caring for those left behind following the death of a loved one can be more difficult than caring for the hospice patient. The majority of care for a 50-year-old man dying of cancer, for example, may be focused mostly on pain management while he spends the remainder of his life surrounded by family and friends.
But there are no shots or pills that relieve the pain caused by grief. And unlike physical pain, there is no immediate indication that the balm administered by professionals is working.
To that end, the hospice industry has been trying to apply outcomes measurement to bereavement care, in much the same way that the rest of the industry has applied the discipline to clinical procedures. But moving from having no measurable data to compiling usable information that will allow hospices to compare their own bereavement programs to nationally compiled data has been tantamount to sending a man to the moon.
How do you know you’re being effective?
At the heart of the industry’s quest for bereavement outcomes is the need for hospices to determine whether their efforts are meeting the goals they set for their program and for the individual clients they serve.
In short, hospices are asking: How do we know if our program is as effective as it can be?
"That’s a question we’ve been asking ourselves," says Noreen Carrington, LMSP, director of bereavement and volunteer services for San Diego Hospice, whose bereavement program is one of the largest in the country.
If one of the country’s standout programs acknowledges that it, too, is unable to collect measurable data to evaluate the effectiveness of its programs, then it stands to reason that most other hospices — large and small — have yet to take their first steps.
Most hospice programs approach bereavement care by applying a set of goals laid out in a bereavement care plan. These goals may call for bereavement professionals to help grieving clients:
• to express all the feelings over this loss: anguish, longing, relief, anger, depression, numbness, despair, aching, guilt, confusion, and often unbearable pain;
• to let the nonnegotiable and excruciating reality sink in that they will never again be in the physical presence of their deceased loved one;
• to review their relationship with the deceased patient from the beginning and to see the positive and negative aspects of the person and the relationship;
• to identify and heal unresolved issues and regrets;
• to explore the changes in their family and other relationships;
• to integrate all the changes into a new sense of themselves and to take on healthy new ways of being in the world without this person;
• to form a healthy new inner relationship with this person and to find new ways of relating to him or her.
San Diego Hospice is like many hospices around the country in that it employs standard bereavement programs that are a combination of therapy and support, such as counseling, support groups, and a variety of community resources.
Database would allow national comparison
The National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, has also recognized the importance of developing outcomes-based bereavement programs. It has taken the first steps toward developing a national database of bereavement information so that its members can one day compare the results of their bereavement programs to those of others and make necessary changes to improve their own outcomes.
In conjunction with the National Hospice Work Group, the NHPCO examined the perceived effectiveness of support given by hospice staff. Researchers conducted surveys two months following the death of patients and after 13 months. Overwhelmingly, the survey found family members received pre-death support, enabling them to prepare for their loved ones’ deaths. Of the 1,739 surveys, 1,612 (93%) of the respondents indicated effective pre-death emotional support, while 127 (7%) indicated lack of emotional support.
Thirty percent of these surveys were sent to caregivers with hospice care for seven or fewer days, 32% were sent to caregivers with hospice care for eight to 30 days, and 38% were sent to caregivers with hospice care for 31 or more days. Pre-death emotional support was indicated by 91.1% of those who received care for seven or fewer days, 92.3% of those who received care for eight to 30 days, and 94.3% of those who received care for 31 or more days.
Completing the data picture
Clearly, this is one slice of a very complicated phenomenon. "We want to collect more data to paint a complete picture," says Stephen Conner, PhD, vice president of research for the NHPCO.
The outcomes project did not attempt to measure risk factors that may prolong grief. Indications of complicated grief or the possibility that a family member will experience chronic grief include:
• Guilt. The survivor feels guilty for a number of reasons, including trying to move on or for having failed as a caregiver.
• Unrelenting anger and hostility. The survivor cannot engage normal daily activities without feelings of anger.
• Increased drug and alcohol use. Drugs and alcohol become a means of numbing pain or escaping reality.
• An inability to carry out daily tasks or responsibilities months after the loss. For example, the survivor fails to keep up with housework or cannot complete required duties of his or her job.
• Thoughts of suicide. The survivor not only expresses a desire to die, but describes how he or she would follow through.
• Unrelenting loneliness. Despite the support of family, friends and counselors, the bereaved feels isolated and alone.
Experts believe the measurement of these characteristics of grief will hold the key. But the NHPCO is not the first to study bereavement outcomes. Prior researchers have experienced limited success in trying to discover the important factors that result in positive bereavement outcomes, including how age and culture affect the grieving process.
Past research focused on the following indicators to measure grief both at the time of the loved one’s death and a year later:
• change in percentage of times the participant found memories comforting;
• change in percentage of time the participant found that grief influences their ability to make day-to-day decisions;
• change in participant rating of the intensity level of their sadness.
While hospices are not much closer to practical bereavement outcomes programs, research has yielded valuable insights. For example, while hospice programs generally provide bereavement care for a year, research has shown that many people continue to grieve well beyond the first year, perhaps even more than when the loved one first died. Experts now believe that the prolonged grief is not necessarily an indication of ineffective grieving, but is a function of an individual need to grieve longer. It is that very aspect of grief that makes bereavement outcomes measurement so difficult.
"If we knew how to do it, we’d already be doing it," says Cendra Lynne, PhD, director of Grief.Net, an on-line resource for bereavement researchers and for those looking for bereavement support. "The problem is that there is a wide variety in the normalcy of grief, and we don’t understand how grief works."
So, absent of any working outcomes measurement tool, what can hospices do to ensure the continual improvement of their programs? The answer, Lynne and Carrington say, lies within the individual hospices themselves and the expertise they already have.
"Someone who has worked for 15 years with grieving families is the best resource a hospice can have," says Lynne.
Bereavement programs can be improved through common sense, Lynne adds. Hospices that understand the population they serve and then tailor care to the individual will have gone a long way to establishing a foundation for improvement.
At San Diego Hospice, a bereavement plan of care is initiated when the patient is admitted to hospice following a terminal diagnosis. This is not unusual among hospices, but it underscores the simplicity of program improvement.
Based upon the initial assessment of the caregiver, individual goals, such as acknowledgement of feelings and of loss, are set throughout the patient’s hospice stay and for the months or years following death. While a hospice may not be quantifying its ability to meet its goals throughout the plan of care, workers should be in tune with goals that are typically difficult to achieve or take longer to achieve than others.
"At a given place in time, a patient should be able to move on with their lives," says Carrington.