Living Every Day
By KJ Fields
For patients nearing end of life, hospice offers a way to maximize quality of life.
After 11 years of battling uterine cancer, Janet Fritts, a 58-year-old Group Health member, knew her condition was in an extremely advanced stage. Her doctors told her that there was nothing else they could do, and suggested her pain could be better managed on hospice care. Initially, she was nervous about joining hospice. "I was afraid I'd have to be in bed the entire time," recalled Fritts late last winter, a few weeks before she passed away. "But I've traveled to San Francisco and Canada while on hospice. The nurses are just like friends, and they've helped my family gain confidence in how to care for me. If someone had told me what it was really like, I would have jumped into hospice a lot sooner."
According to Susan Frank, RN, a Group Health Home Health and Hospice nurse, many people share Fritts' confusion. "There's a tendency to equate hospice care with death, but what we really do is enhance the quality of life for the longest time possible. A hospice team addresses all aspects of suffering, from controlling physical symptoms to alleviating anxiety, so patients can be more active and better meet their own goals."
One reason that people may resist hospice care is that end-of-life issues are emotionally complicated for patients, their families, and even some medical professionals. Family dynamics, religion, and other belief systems come into play, along with science. The advances in medicine in the past 50 years have given Americans hope that virtually anything can be cured. And then there is our society's discomfort in dealing with and discussing death.
To complicate matters, when it comes to determining how long someone has to live, doctors are in a difficult position. Patients who are facing the end of life and want to talk about it, may find that their doctor is less than forthcoming. "It's a powerful thing for a doctor to say that you have a limited amount of time left," says Margaret Gaines, MD, a geriatric and palliative medicine physician at Home Health and Hospice. "Doctors don't want to upset their patients, and there are always uncertainties about exactly how long someone will live. Sometimes, when physicians are straightforward, the patient is not ready to accept the diagnosis."
For patients with terminal illness, the conversation about hospice care is worth having with their doctor. According to Linda Norlander, RN, associate director of Home Health and Hospice and author of several books on end-of-life care, doctors are waiting for patients to bring up hospice and patients are waiting for their doctors to do so. "You can ask about hospice care at any time, and it's important to be well informed. In follow-up surveys after hospice patients pass away, families say that hospice made a world of difference. The most common response is that they wish they had known about it sooner."
Group Health's Hospice Program is available to patients who have been diagnosed with six months or less to live and have decided to no longer pursue curative treatment. The care is geared toward supporting the patient's mind, body, and spirit. Hospice teams include a physician, nurse, social worker, spiritual counselor, hospice aide who helps with bathing and personal care, and a volunteer who may run errands or stay with the patient to give the main family caregiver some free time. Bereavement coordinators who stay in touch with the family after the patient dies are also part of hospice care.
Although hospice team members are usually in the home for limited amounts of time, they are available by phone 24/7. Hospice nurses provide pain management, help control symptoms, teach family caregivers how to care for their loved one, and identify small environmental improvements that make patients' lives easier. The social workers can connect patients and their families to a full range of community resources. Before she passed away, Fritts had a hospice volunteer help her write a letter to each of her children. "I'm so thankful for this service. I've picked out certain photos and am writing why these pictures are so special to me. It will be something my children can keep," she said.
Families play a critical role in end-of-life care, although hospice nurse Shari Riggs, RN, notes that the definition of what constitutes a family can vary greatly. "We understand that 'families' come in all shapes and sizes — from relatives to close friends or even neighbors. Whoever the family caregivers are, it's important for them to advocate for their loved one. Go to a doctor appointment with them and ask some questions so you can be informed," Riggs says.
Dr. Gaines says that although end-of-life care is a difficult subject to talk about, the only thing more difficult is not talking about it. Without a discussion — or having documents in place that spell out a patient's wishes family members, other caregivers, and medical professionals may not understand what the patient wants. "I've seen families take patients back to the ICU again and again to postpone the inevitable when it's clear that the patient is no longer enjoying life," says Dr. Gaines.
Hospice care offers what is often a better alternative. "It allows people to die in the comfort of familiar surroundings with their family and those that care about them by their side, rather than the sterile environment of the ICU. Death is part of our life cycle, and it can be just as profound or beautiful as birth," says Dr. Gaines.
Riggs aims to help her patients pass away with dignity and grace, and guide the family toward a positive experience. "There's no doubt that there is sadness, loss, and grief, but I hope to help them see the beauty in the life that they had."
Making medical decisions about the type of care you want to receive if you have a terminal illness or serious injury may be one of the greatest gifts you can give your family. Advance directives are a set of legal documents that help you do this, should you be unable to speak for yourself. Because devastating injuries can happen at any time, Linda Norlander, RN, says that all adults should consider signing advance directives.
Group Health offers free, two-hour group workshops called Your Life, Your Choices to help you make informed decisions about your end-of-life care.
Advance directives include:
- Health Care Directive (living will): Instructions you provide for physicians about your medical care when you are in a condition where you are unable to speak for yourself.
- Durable Power of Attorney for Health Care: A formal designation of a person (agent) to make decisions for you if you are unable to speak for yourself due to illness or injury.
- Physician Orders for Life-Sustaining Treatment (POLST): Turns your decisions about emergency or life-prolonging care into real orders regardless of where you are.
- Download and complete these documents. Once completed, copies should be filed with Group Health.
"These forms should be finalized before you are in the midst of a critical situation," says Norlander. "If a family member is reluctant to complete the forms, a good way to get the process going is to fill out the forms yourself and then encourage loved ones to join you in the effort."
Palliative Care for Terminally Ill Patients
Group Health offers a program through Home Health and Hospice for patients who are not ready for hospice, but who have an advanced illness. This specialized palliative care program is for those who:
- May need support for managing their illness.
- Have a prognosis of 18 months or less to live.
- Have chronic lung disease, congestive heart failure, or cancer.
- Are homebound and require intermittent nursing visits.
In the palliative care program, which is under the Medicare-certified Home Health Program, patients receive many of the same types of services as patients in the Hospice Program.