Research will help you identify what is available
When a patient has a terminal illness, it’s often possible to complement the patient’s health care benefits with community resources to make his or her final days more comfortable and less stressful for the family, asserts B.K. Kizziar, RNC, CCM, CLP, owner of B.K. & Associates, a Southlake, TX, case management consulting firm.
"One of the biggest gaps is not coordinating what the payer provides with resources that are available in the community," she adds.
For instance, the American Cancer Society will help meet simple durable medical equipment needs and provide support groups for families and patients. Some community organizations provide pastoral services for families to guide them through the difficult days.
"Sometimes, we as case managers are so busy looking at what is covered by insurance that we fail to look at what is available in the community," Kizziar says.
You don’t have to know everything about every service available, she adds, but know where to find out if any services your patients need are available in your community.
One of the best ways to update yourself about community and other resources is through the Internet, Kizziar says.
"I was recently exploring resources for traumatic brain injuries, and even though it’s my specialty, I found out services I didn’t know were available," she says. Benefits for hospice services differ widely among payers, but typically, there are elements of the hospice benefit that people don’t take advantage of, she says. "We’re not always good about assessing the full extent of what is available through the hospice benefit."
Among the often-untapped hospice benefits are social services, which include social worker benefits and support groups for the family. The best place to start looking for community services is under "Hospice."
Then check out disease-specific organizations, such as the American Cancer Society. Some of these organizations have very specific resources for the specific disease, Kizziar says.
Working as a team
More difficulties are likely to arise as the family or individual decides where the patient will spend his or her last days.
"It’s difficult when you have a dying patient and their situation does not meet a payer’s standard to be an inpatient at a hospital or a nursing home but the family is ill-equipped by experience or desire to handle the patient at home. It’s a real dilemma for case managers," Kizziar says.
She advises case managers on the payer side to work with the hospital-based case manager to find out what resources are available in the community and if it is necessary for the family to go home to find ways to support the family as much as they can.
"It is important for payer and provider case managers to work together as a team. There is never a reason to work at cross-purposes, but they shouldn’t even consider it in this situation," Kizziar says.
One of the biggest challenges the case manager faces is trying to help with end-of-life issues when the patient and family are in denial, she adds.
"There are times when physicians fail to tell patients they are terminal. It’s very tragic," Kizziar says.
At these times, the case manager may be the person who has to break the news to the family.
You need buy-in from the entire treatment team, including the physician, to bring the patient and family to the point that they accept the diagnosis. This is when you need to marshal your forces to help the family through the transition period.
"We have to make sure we are all on the same page and in agreement that that is what is going to happen. You should advise the physician you are doing it, even though it is the patient’s and family’s right to know," Kizziar says.
Sometimes the family wants to keep the news from the patient. That’s why everybody on the treatment team needs to be on the same game plan to help the family identify resources available for them.
The physician may have his or her own objectives in not telling the family. He or she may want to wait until after a few more tests.
"If he has a reason not to tell the family the patient is terminally ill and you tell them, it can cause more problems and turmoil, rather than being supportive to the family," she says.
When it’s a child who is terminally ill, the situation is even more difficult because the parents may feel guilt that they did something wrong.
"With a terminally ill child, it’s vitally important for the case manager to be up front and objective and to apply every resource available," Kizziar says.
End-of-life resources on the Internet
Here are some resources for end-of-life information available on the Internet:
- American Cancer Society: www.cancer.org
- American Parkinson’s Disease Association: www.pda.healthology.com
- Association for Death Education and Counseling: www.adec.org
- Colorado HealthSite, a nonprofit organization providing health care information: www.coloradohealthsite.org
- American Hospice Society: www.hospice info.org
- Healthlink USA, an Internet search provider: www.healthlinkusa.com
- American Academy of Hospice and Palliative Medicine: www.aahpm.org
- Robert Wood Johnson Foundation: www.rwjf.org
- Last Acts, a national coalition to improve end-of-life care: www.lastacts.org
- American Association of Retired Persons: www.aarp.com
- American Counseling Association: www.counseling.org
- American Society of Psychosocial & Behavioral Oncology/AIDS: www.ipos-aspboa.org