As trusted healthcare professionals, nurses cna show patients and famiilies hospice's benefits

By Betsy Murphy, FNP, CHPN, & Michelle Thrush, LCSW

When a patient is nearing the end of life, physicians and healthcare professionals often don't offer hospice. The reason? They feel the patient/family is not ready. The oncologist, hospital case manager or social worker, however well intentioned, has made the decision for the patient. This occurs despite research showing that patients and families want to have control and discuss their end-of-life preferences.¹

Nurses are often in positions to talk with patients or families about options for care. In hospital settings and nursing homes, nurses can be asked to participate in care that feels inappropriate or, worse, is harmful to the patient, based on other caregiver's perceptions. Nurses' compassion for the patient and family compels them to offer alternatives, and they often find themselves being the first healthcare professional to bring up the idea of hospice care.

In this article, we offer suggestions to nurses in their quest to facilitate access to hospice care for appropriate patients by identifying common barriers and finding new ways to talk about hospice care with prospective patients and families.

Why Patients May Refuse Hospice

A primary reason patients refuse hospice may be fear that their physician will no longer offer treatment options that will prolong life. One family member said that if they chose hospice, the patient would be left in the corner of the nursing home to die. This family member feared that hospice provides less care and their loved one would be deprived of state-of-the-art medical care.

It is important to correct this spoken or unspoken misconception when you present hospice care to families. You could say something to the effect of, "You know, Mr. Jones, you don't give up anything in choosing hospice care. The Medicare benefit is built on the foundation of patient choice. Patients can elect the benefit today and revoke it tomorrow with no penalty or loss of service days. Hospice care does not mean less care, it means more care will be provided in addition to the good care you are already receiving from your healthcare providers and hands-on caregivers."

When we talk with patients, are we expecting them to admit they are terminal and have no treatment options left? Using the word "terminal" can be overwhelming to patients. In order to cope with their illness, some patients and families need to protect themselves from threatening news. The patient or family may stop the interview, saying they want to discuss more treatment options with their doctor. They may be testing you and gauging your response. They are asking, is it OK for me to seek other options? How locked in will I be in choosing hospice? The concept that there is absolutely nothing else that can be done would be intolerable to anyone. Hope for a future treatment is essential for the patient. That same hope will change with time. It may focus away from the idea of hope for cure to wanting quality time with family.

Creating Trust

In keeping with the hospice philosophy of meeting patients where they are, it is clearly not our job to make them fully understand their disease is terminal. Can we allow them to maintain this hope and not allow it to interfere with their receiving hospice services? You might say to a patient, "Choosing hospice care does not take away your options; if you choose something in the future that is not covered by hospice, you can opt out of your benefit at any time to pursue that option. In the meantime, you can be getting help with bathing and emotional and spiritual support and payment for medications and medical supplies."

A third reason patients or families refuse hospice may be anger. Have you ever been so angry that you refuse the help that you need? Bottled-up emotions may prevent some patients or family members from thinking clearly. These patients will benefit from the interviewer validating their feelings and allowing them to be angry. In accepting them where they are emotionally, we make it safe. We validate and communicate that they don't have to be different than how they are.

Sometimes a patient will be silent. They may be deciding if they can trust you. Allowing silence as we allow anger says we accept them as they are. They need to have control over our interaction. Allowing both anger and silence is the building block of creating trust.

For some patients, the fear is financial. In assisted living facilities, there are additional charges for additional services, and families are often concerned that hospice will just be another charge. Families are uncomfortable exploring this issue, as it will appear they are reluctant to spend the money on their loved one. The financial advantages of electing hospice needs to be spelled out in detail. We have seen many family members whose objections were removed once they understood the financial benefits.

Staying in Control

Feeling a loss of control is an issue that sometimes makes hospice services unacceptable. In addition, patients' and families' emotional energy reserves are low. We present the spectrum of services offered from RNs, social workers, aides, volunteers, etc., thinking it is impressive. Families fear an army of professionals coming when the patient is exhausted, and staying for too long. Tell the family, "You are in charge here, you dictate when hospice staff visit and how long they stay." Clarifying the fact that the patient/family controls visitations often alleviates this objection.

Some families fear that outsiders will judge them. They are unsure if they are care giving correctly. When we praise families for the good care they give, we build the necessary trust: "You have done a beautiful job caring for his skin. The hospice team can provide you with the necessary rest that you need to keep doing this excellent work."

A final reason that patients refuse hospice is simply fear that if they sign up for hospice they will die sooner. It can be reassuring for patients to hear that some hospices discharge more than 5 percent of their patients each month because they improve. And research shows that patients actually live longer in hospice care than similar patients who did not receive hospice care.² One patient said to me, with great humor, "Oh, and then if I sign up with hospice, I am not under any contractual obligation to die."

Presenting hospice care as a flexible program geared to meet the needs of each patient and family is helpful. Focusing on what the patient/family states they want or need, and how hospice can meet that need, rather than citing the services hospice provides, may yield a higher level of acceptance. Nurses are trusted by patients and families. Endorsing hospice as a service you believe will help them can open the door to their receiving the care and support they need.

>References

1. Steinhauser, K. et al. (2001). Preparing for the end of life: Preferences of patients, families, physicians and other care providers. Journal of Pain and Symptom Management, 22(3), 727-737.

2. Pyenson, B. et al. (2004). Medicare cost in matched hospice and non-hospice cohorts. Journal of Pain and Symptom Management, 28(3), 200-210.

Betsy Murphy is a nurse practitioner and area director for marketing and business development for Capital Hospice. Michelle Thrush is a licensed clinical social worker on the Loudoun County, VA, long-term care team for Capital Hospice.