Let’s face it. Death is a difficult topic. No one wants to think about it. Few are willing to talk about it. But we’ll all deal with it, eventually. Many will go through the final days with an elderly parent, family member or friend. Some will need to manage the details from afar. But end of life doesn’t need to be so daunting or depressing or dreaded. It can be full of life-affirming moments of compassionate care.
Advance planning is key to making sure a loved one’s final days are as comfortable and organized as possible. However, even if you’ve already started down that road with a family member or friend and don’t know where you’re headed, it’s not too late to get the information you need to help make smart decisions. Among the most difficult aspects of hospice care are the preconceived ideas about end of life. There are many myths surrounding hospice. There’s also fear. Facing the truth head on and taking action could be the best course for you and your family. In this and the next two columns, we’ll address several of the myths about hospice, and hopefully give you or someone you’re caring for a clearer view of the road ahead.
Myth No. 1
Hospice is the place to go when there is “nothing else to be done.” In a nutshell, hospice is not always the last resort for the dying, and neither hastens nor postpones death. Instead, this concept of care affirms life and faces dying as a normal part of living. It’s a holistic approach for families that creates a unique care plan with the individual and family caregiver at the center of attention.
Hospice not only provides an individual with medical care, pain management and emotional and spiritual support, but offers support for the family caregiver – who serves as the primary caregiver – throughout his or her loved one’s illness and typically for at least a year following that individual’s death. Hospice care focuses on helping to improve the quality of life and helps an individual live with dignity during the time that is left. Its goal is to help people complete life’s journey with comfort, dignity and companionship.
Symptom management is a major focus of hospice care. Relief and comfort are the goals when there is no definitive cure for the illness. Statistics show that 80 percent of hospice care is provided in the patient’s home, family member’s home and in nursing homes. In-patient hospice facilities are also sometimes available to assist with caregiving. Even though the family caregiver is typically the main hospice provider, a team of professionals – led by a physician – work together to provide the best possible care and meet the needs of the patient and family.
More than 9 in 10 Americans would prefer to receive hospice care in the comfort of their homes, according to the January 2014 poll “Generation to Generation: Gauging the Golden Years.” In conjunction with hospice, you may hear the term palliative care. Some may use this care term interchangeably with hospice. However, hospice care and palliative care are not the same.
Palliative care can best be described as pain relieving or comfort care. People of any age can receive palliative care for serious illness whether it’s life-threatening, a chronic condition or a life-limiting illness. The goal of palliative care is to help improve symptoms and relieve pain and stress from these conditions. Palliative care aims to provide relief from pain, shortness of breath, nausea and other distressing symptoms.
This care can be applied early in the course of illness, with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy. Palliative care can start at the diagnosis, and occur in addition to and simultaneously with care designed to cure or prolong life. Palliative care is primarily private pay and may be difficult to access in many areas or hospital settings. All hospice care is palliative, but not all palliative care is hospice care. The major difference between the two types of care is the prognosis of the illness and the goals of the person receiving the care.
Palliative care vs. hospice
Mary’s 80-year-old mother, Fran, hadn’t been feeling well for weeks. A trip to her family doctor and a series of tests pointed to an infected gallbladder. However, when doctors performed surgery to remove the gallbladder, they made another discovery. Surgeons found widespread cancer and removed as much as they could. After surgery they gave Fran and her family the bad news. Understandably, Fran wanted to do everything to try to cure the cancer. At this point in her care, Fran’s goal was a cure. So Fran’s doctors needed to strike a balance between comfort and steps to help achieve a cure (hospitalizations, tests, office visits and interventions such as chemotherapy, radiation and surgery). This approach is considered “curative” and “palliative.”
Four months later, Fran’s medical team concluded that further intervention had little to no chance of curing her cancer. Fran had reached a “tipping point” where the burdens of this approach outweighed any benefits. At this point, it made sense to Fran and her family to change their focus from the cure approach entirely to comfort, maximizing the quality and well-being of her remaining time. She was now ready to embrace the hospice philosophy.
Myth No. 2
As a family caregiver, I am all alone on my journey. Although family caregivers serve as the primary caregivers for their loved ones, you are never alone. You have an expert team to call upon when you need assistance. A team approach can help families make the most of their time together. A hospice team typically includes the following members:
• Physician: An ongoing role of the physician(s) generally is to manage the patient’s symptoms and pain. This involves regular evaluation of comfort and modification of medication as pain and other symptoms may increase.
• Family caregiver: The family caregiver(s) is at the center of the hospice team and the primary caregiver on the hospice team. Family caregivers typically provide care their loved one would receive while in the hospital or a hospice center; for example, bathing, toileting, grooming and assistance with eating. However, caregivers also can look to other members of the team for help and support.
• Nurses: Nurses generally check in to make sure the patient is comfortable and his or her physical needs are being met. Nurses on the core hospice team also educate family members, teaching them techniques for personal care and ways to help keep their loved one comfortable.
• Social workers: Once a family decides to use hospice care, social workers provide information and help coordinate community services such as additional home care or government benefits.
• Chaplain: A chaplain provides spiritual support to the person on hospice and his/her family members.
• Speech/physical therapist: While not part of the core hospice team, a person on hospice may need the assistance of a speech therapist to show him or her techniques to communicate with family members and caregivers. A physical therapist may help a hospice patient learn to move with a disability or a new device.
• Hospice volunteers: Volunteers help by providing the patient with support and companionship.
• Hospice staff: A hospice staff member, such as a home health aide, is available on an intermittent basis, usually one time a week, for assistance with tasks such as bathing.
• Professional caregivers: Outside caregivers from in-home care companies are available to help as well. They can provide care directly, such as companionship, personal care, meal preparation and light housekeeping. They can also provide respite help if the family needs time away or has an outside commitment. A caregiver also can support the family by providing their loved one assistance with laundry, medication reminders and errands.
“The hospice philosophy focuses on quality not quantity. The emphasis is on living comfortably and with dignity. It’s not counting the days, but celebrating the life we’ve lived, and making the most of every moment,” says Dr. Larry W. Parsons, hospice and palliative care specialist. Next week we will continue with the hospice topic. If you would like our booklet on “The Truth about Hospice,” call my office. If you are interested in a list of hospice organizations in Sonoma County, call us.
Julie Ann Soukoulis is the owner of Home Instead Senior care office in Rohnert Park, mother of two and passionate about healthy living at all ages. Having cared for her parents, she understands your struggles and aims, through her website, www.homeinstead.com/sonoma to educate and encourage seniors and caregivers. Have a caregiving or aging concern? She’d love to hear from you at 586-1516 anytime.