Hospice nurses prepare patients nearing death and their families for the inevitable while helping them live life to the fullest during their remaining days. That includes palliating symptoms, offering emotional support and coordinating additional services.
We are privileged to be with patients and their families on their final journey, said Lynn Von der Linden, RN, BSN, case manager at Barnabas Health Hospice and Palliative Care Center in West Orange, N.J., who described her job as one of bringing comfort and assessing and meeting needs. Hospice is about living. We want to make the best of every day we have, no matter how many days we have left.
A physician must certify that a patient has six months or less to live; then hospice provides care, supplies, medications and other services to those patients. More than 1.5 million Americans received hospice care last year from more than 5,500 hospice programs, according to the National Hospice and Palliative Care Organizations annual Facts and Figures: Hospice Care in America report.
Ellen Lockhart, RN, a nurse with Valley Hospice, part of Valley Home Care in Paramus, N.J., described hospice as a calling, saying she enjoys developing relationships and helping someone pass on with comfort, dignity and respect.
An interdisciplinary approach to care
Hospice uses an interdisciplinary approach to care planning, and its up to the nurse to drive that plan, said Sandra Davis, RN, Brooklyn community hospice manager for MJHS in New York.
The interdisciplinary team generally consists of physicians, nurses, volunteers, home health aides, bereavement counselors, social workers, spiritual counselors and speech, physical and occupational therapists. The patient and family are kept at the center of the team.
Interdisciplinary teams, generally, meet weekly and discuss every patients needs. They bounce ideas off of each other and draw from past experience to come up with ways to handle current challenges. For instance, a chaplain may have found singing hymns distracts a certain patient and puts her more at peace. Sharing that with the team allows other members to reinforce singing as a coping method with that patient.
Nurses caring for the patient
As patients approach the end of life, they may often suffer from pain, agitation, dyspnea, constipation or insomnia. Nurses assess the patient, evaluate interventions and work with the team to manage those symptoms, Von der Linden said.
Hospices often leave a comfort pack or symptom relief kit in the home, so that medications are readily available with standing orders at Valley Hospice or for instances when a provider gives an order to administer specific drugs. However, symptom management requires more than administering medications. Often the families are fearful about giving morphine or other drugs, and a nurse must explain the reasoning, side effects and how to manage those medications, explained Lockhart. For instance, a patient taking opioids on a regular basis will require a bowel regimen to keep the GI tract functioning. Lockhart said the vast majority of the time hospice nurses can make a patient comfortable. About 66.7% of the time hospices are able to bring a patients pain to a comfortable level within 48 hours of the initial assessment, according to the NHPCO report.
Hospice nurses offer more than management of physical symptoms. They take time to sit at patients bedsides, hold their hands and talk with them about life, death and the emotions of knowing time on earth is short. Lockhart considers that a privilege.
You try to explore what they are feeling, she said. You need to listen with an open mind and never judge anybody.
Sometimes patients question their own belief system and what they did to deserve their current situation. While chaplains, rabbis and other religious clergy take the lead with spiritual care, the nurse must be prepared when the patient wants to discuss such matters. I would definitely just listen and provide support and validation, Davis said. Then I would request if I could reach out to a spiritual [counselor] for a follow up.
Nurses caring for the family
Providing care in the home offers great opportunities to assess the caregivers needs as families frequently struggle with why their loved ones are dying. Were managing symptoms, but its [also] support of the family, according to Davis, who said it was rewarding to make a difference, but important to keep the relationship professional. You are in the home day after day, week after week, and you become attached to the families and patients.
Sometimes, caring for the family means noticing when they need a break. Volunteers who are part of the hospice team offer caregivers short periods of time to themselves to perhaps get their hair done, read a book or go for a walk. Nurses also can recommend that the patient receive five days of respite care at a nursing home to allow the family time to rest. Von der Linden estimated about 90% of the job involves working with families and educating them about the dying process, the patients health status and hospice. Hospices typically provide bereavement support for one year following the death of a patient, which may include follow-up phone calls, visits and access to support groups.
The challenge of late admissions
Many admissions come late in the disease trajectory. In 2012, 35.5% of hospice patients died or were discharged within seven days of admission to the hospice agency, and the median length of stay was 18.7 days. Earlier access to hospice can reduce ED visits and hospital admissions and improve patients quality of life.
Late referrals concern hospice nurses, who know they could do so much more to help the patient and family if they had weeks or months together instead of hours or days. Von der Linden said people often seek aggressive treatments until near the end.
Nurse care managers may help bring people to hospice sooner, by educating patients near the end of life and their family members about hospice and how it will benefit them if it fits their goals of care.
Caryn Donocoff, RN, BSN, chronic care manager on the Hospice and Palliative Care team at the Montefiore Medical Center Care Management Program, Bronx, N.Y., which provides case management for about 250,000 people, will visit with terminally ill patients and their families before discharge from the hospital and ask about their end-of-life wishes. If the focus is on comfort care and relief of symptoms and the patient agrees, she will arrange for hospice care, within hours if needed. As a former hospice nurse, she can discuss services like spiritual support, bereavement counseling and full coverage of medications and supplies. Once services begin, she follows up by telephone with the patient or family and encourages them to use the hospice resources.
Its a very emotional time, and we try to make sure they are supported during the process, said Donocoff.
Debra Anscombe Wood, RN, is a freelance writer.
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