Help patients, families cope with end-of-life situations
As an advocate, you can help them make choices
It's a situation case managers encounter with agonizing frequency: physicians who keep pumping medication into patients who are terminally ill or families who insist on continuing treatment when the clinical picture indicates that the patient's condition is terminal.
"I have seen a tremendous number of patients who die a very cold, sterile, and unfulfilled death in the ICU and have seen their families struggle with it. It's a heartbreaking experience. We focus so much on just medical care, and many patients get very little care for their palliative needs and spiritual needs," says Pam Seaver, RN, BSN, MTS, CCRN, PCC, pastoral care nurse with Medical City Dallas Hospital's surgical intensive care unit and Hospice of Grayson County in Sherman, TX.
Doctors aren't trained in death. They're trained in life and they don't feel comfortable with end-of-life issues. Many of them keep on trying to treat patients even when there is no hope left, says B.K. Kizziar, RN-BC, CCM, CLP, owner of B.K. & Associates, a Southlake, TX, case management consulting firm.
"Health care in general has an aversion to end-of-life issues. Our job is to make people well, and we see it as a failure when we can't do that. Even oncologists, whose primary practice involves dying patients, are reluctant to stop active treatment and refer patients to hospice," she adds.
Kizziar knows the situation firsthand. She has found that the caregivers for her terminally ill mother are reluctant to talk openly about end-of-life issues.
"I'm the one who brings it up, and they look kind of shocked," she says.
A physician has to certify that a patient is expected to live six months or less for hospice services to be covered by Medicare, points out Catherine M. Mullahy, RN, BS, CRRN, CCM, president of Mullahy & Associates, a Huntington, NY, consulting firm.
"That in itself makes physicians reluctant to order hospice because it signals that they think the patient is at the end of life. There are too many people who could benefit from hospice care who do not get it or who get it only in the last few weeks of life," she adds.
"The worst-case scenario is when the patient and family are saying 'enough is enough.' and the doctor just keeps on trying. As the patient advocates we all are, we hate to see that happen," says Jan Tichenor, RN, MSN, CNS, OCN, oncology care coordinator at Medical City Dallas Hospital.
"As a nurse, it's very challenging to be put in the middle between the physician who wants to keep treating and the patient and family who want quality time together. Sometimes the family is ready for hospice before the physician," Tichenor adds.
In such cases, Mullahy urges case managers to summon the courage to talk to the physician.
"Someone has to be an advocate for the patient and take the first step to talk to the physicians. So often, medical professionals are so busy trying to pull another rabbit out of a hat that they are hurting people. Case managers are ideally positioned for the conversation with physicians since they are advocates for the patient," she says.
Situations such as those emphasize why case managers should have a good working relationship with physicians, Kizziar adds.
"One of the first messages we give case managers is to partner with physicians and build credibility. You can't do that if you're spending your day in an office reviewing charts," she says.
Make rounds with the physicians and get to know them. Make yourself important to them so you'll have some credibility and physicians will listen when you say the family is feeling guilty about continuing treatment and hospice may be an option, Kizziar suggests.
"If you just show up every time the insurance company says the patient is out of days or you need him or her to sign something, that's not a relationship. It's crucial to develop a relationship with the physician. Otherwise, he or she won't listen," she says.
Sometimes it's the family who just isn't willing to let go and who wants to continue treatment so they can have more time with the person they love, Seaver adds.
"As long as the physician is getting cues from the family that they don't want to stop treatment, they have to continue to treat the patient. I see the spiritual and emotional turmoil in the physicians in these situations," she says.
Talk with patients, families
It helps to get together and talk about the patient's expectations, Tichenor says.
"Patients and family members may have heard different things from different physicians, and often what they heard isn't what the physician actually said. They're under stress, and a lot of things don't sink in. It's helpful to get everybody in the same room to ask and answer questions and clarify the situation," she says.
Start by asking the family members what the physician has told them and what their understanding of their loved one's conditions is. Ask what their expectations are and start there, Tichenor adds.
Many times the situation can be resolved by bringing together the clinical team and the family for a discussion about the patient's condition and outlook for the future, she says.
"Sometimes it's hard to get everyone together, especially if there are multiple specialists caring for the patient; but case managers should try to assemble the key people along with the family members. When everybody hears the same information and the family members have a chance to vent their feelings and ask questions, things usually get resolved and everyone can agree on what to do next," Tichenor says.
Often family members think that if the patient isn't receiving aggressive care, he or she may not receive pain control.
The family may need reassurance that removing aggressive therapy or turning off the vent in no way takes away pain management. Having the family, the case manager, the social worker, and key physicians sit down and talk about it can allay those fears, Tichenor adds.
"Case managers can play a critical role in end-of-life care because they can help identify patients who are struggling with their disease and the fact that they are coming to an end-of-life situation. They can call in the appropriate people in their institute for a discussion," says Cathy Follmer, RN, BSN, MBA/HCM, CHCE, CRNI, corporate director of continuum of care services for Catholic Healthcare Partners, a multistate health care system with headquarters in Cincinnati.
Since case managers develop rapport with their patients and gain their trust, they may be the best people to introduce the patients and family members to someone who can talk about end-of-life opportunities such as hospice care, Follmer says.
Case managers don't necessarily have to be the ones to have that difficult conversation, she says.
There may be someone else who is more knowledgeable about the subject and can support case managers when they identify a patient or family who would be an appropriate candidate for a discussion.
"Not every case manager is not comfortable talking about end-of-life issues. If they try to have a conversation and they aren't comfortable with the subject, it won't work," Follmer says.
In many of the Catholic Healthcare Partners hospitals, the case managers have incorporated the palliative care coordinator into the multidisciplinary rounds in the intensive care unit as well as on the medical surgical units.
"When the case manager knows that a family is struggling with decision making, the palliative care coordinator can go in and start that delicate discussion," Follmer says.
Get to know your patients and their families so that you feel comfortable in discussing end-of-life issues if the need arises, Kizziar suggests.
"If you bring up things in a conversational way, rather than a clinical way, people will open up about their feelings," she says.
Talk to family members
Seaver suggests inviting a family member for coffee to talk about his or her feelings without approaching the topic of palliative care or hospice.
After you've developed trust and the family starts to feel as if you are compassionate and sympathetic about their loved one, then you can approach them and talk about their options, she says.
"Help them see that they are struggling with the same choices and decisions that families struggle with in a hospice situation," Seaver says.
Start by talking with the family about their feelings. Offer to help in any way you can.
Every situation is different, Seaver points out. What one family chooses may be different from what another chooses.
Keep in mind that the patient is a person the family has loved all their lives and is someone who is very important to them.
Recognize that some people have a tremendous difficulty in letting go, she says.
Find out up front what the patient's wishes are, whether they have advance directives, and if they understand the ramification of code status, Tichenor advises.
"There's such a need for closure, to repair relationships and complete unfinished business. When people are in hospice, hopefully they can be lucid and cognitively aware so they can make amends and take care of business as opposed to being in the ICU on a respirator and sedated," she says.
Ask the family member what they think the patient would like his or her final days to be like. Does the patient want to be in the hospital on a machine or at home with hospice?
"Asking them what they would want if they were the patient helps them look at it from both sides," Tichenor says.
Don't wait until the patient is unresponsive or so sick he or she can't make a choice, Follmer advises.
Try to identify patients who are likely to have end-of-life issues before they get to the intensive care unit, she suggests.
"Once patients are put on a ventilator, families struggle with taking them off. It's more effective to give them the education they need before then," she says.
Remember that if the patient is under complete pain control and comfortable, it's the family that needs the help and support.
"They will live on and remember the last days of their loved ones," Follmer says.
(For more information, contact: Cathy Follmer, RN, BSN, MBA/HCM, CHCE, CRNI, corporate director of continuum of care services, Catholic Healthcare Partners, e-mail: [email protected]; B.K. Kizziar, RN-BC, CCM, CLP, owner, B.K. and Associates, e-mail: [email protected]; Catherine M. Mullahy, RN, BS, CRRN, CCM, president, Mullahy & Associates, e-mail: [email protected]; Pam Seaver, RN, BSN, MTS, CCRN, PCC, pastoral care nurse, Medical City Dallas Hospital, e-mail: [email protected]; Jan Tichenor, RN, MSN, CNS, OCN, oncology care coordinator, Medical City Dallas Hospital, e-mail: [email protected].]
It's a situation case managers encounter with agonizing frequency: physicians who keep pumping medication into patients who are terminally ill or families who insist on continuing treatment when the clinical picture indicates that the patient's condition is terminal.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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