Vol. 13 Issue 6 Page 30
Often, when people hear the word "hospice" they envision a patient lying on his deathbed. But the best hospice programs don't focus on dying; they help patients live out the ends of their lives to the fullest.
Consider a patient in the hospice program at Holy Redeemer Health System in Meadowbrook, Pa., who had mentioned that Christmas was her favorite holiday. At the time it was April, and everyone knew she wasn't going to make it to December. So the staff, together with the patient's family, created a Christmas in April party. They put up a tree in her room, decorated it with ornaments and wrapped presents so she could experience one last Christmas.
Hospice support focuses on pain and physical symptom management, and also meets emotional and spiritual needs, shifting the focus away from dying and towards improving the quality of the time patients have left.
Misconceptions About Hospice
Traditionally, people don't want to talk about hospice because it's equated with death, says Tomasina Chamberlain, RN, MSN, MBA, hospice administrator at Madlyn and Leonard Abramson Center for Jewish Life, North Wales, Pa.
"When a physician or health care professional suggests hospice, the immediate reaction is that the person has days to live," she says. While hospice is recommended for people who have a life expectancy of six months or less, patients sometimes live longer, or even get better.
"Often the good care and support of hospice providers can really improve a patient's status," Chamberlain says.
A Harvard Medical School study found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis were happier, more mobile and in less pain as the end neared, and also lived nearly three months longer.1
Another study conducted at Yale University found that hospice care can also save money. The cost of care for cancer patients who stopped hospice services was nearly five times higher than that for patients who remained with it. Patients who stop hospice are also far more likely to end up needing emergency care, ICU care and to be hospitalized.2
Hospice isn't about ending patient's lives, Chamberlain stresses, although a lot of people have that misconception. Some families think that they call in hospice at the last minute and their loved one passes on. Some even become angry when their loved one doesn't die right away, she says. Staff must educate patients and families about hospice and listen to their wants and needs.
Concurrent & Complementary Therapies
Traditionally, when patients faced a terminal diagnosis, they received either medical treatments or hospice care. Those who chose hospice traditionally discontinued IV hydration or nutrition, explains Terre Mirsch, RN, vice president of hospice at Holy Redeemer. But there's now a clearer recognition that sometimes specific medical interventions can and should co-exist with hospice care. People don't have to choose between having treatments that may prolong life and hospice care-they can have both simultaneously.
"The process of making decisions about hospice is a journey, not a one-time event. The most effective hospice care is delivered by being with the patient and family to make decisions one step at a time," she says. Those decisions often concern IV hydration and nutrition, IV antibiotics and other medications.
Concurrent therapy means that patients have access to medical care and treatment, while also receiving expert pain and symptom management, and emotional and spiritual support from the hospice team.
Complementary therapy, such as reflexology, massage, healing touch and aromatherapy, is also a supportive aspect of palliative hospice care. The use of pets is another effective alternative therapy, and Abramson Center has its own resident dog, Nadine.
Holy Redeemer employs complementary therapy RNs who offer these stress-reduction services to patients and family members. "If we can minimize the stress for caregivers, it enables them to continue caring for their loved ones in the best possible environment," Mirsch says.
In addition to the specialized complementary therapy nurses, all of the Holy Redeemer staff has received training in complementary therapy, such as basic hand massage. "We have found that this not only benefits patients and families, it benefits our staff. It emphasizes the holistic approach to care and that human connectedness that is sometimes lost in our busy day-to-day lives," she adds.
Physical, Emotional & Spiritual Needs
When people are facing the end of life, it's not just their bodies that need care and attention. Hospice care also focuses on quality of life, including emotional and spiritual issues. Toward the end of life, the dying person may need to deal with unresolved relationship issues with a friend, child or spouse. Hospice gives people the gift of time to get their affairs in order, Chamberlain says.
Medical social workers counsel patients and families at the Abramson Center. On the first visit, they evaluate for complicated bereavement. "We initiate interventions from the first visit if we feel that a patient or loved one will have an especially difficult time," Chamberlain says.
Often when people are sick, they struggle with their faith and what their life has meant. Providing spiritual support at the end of life, not just for the person who's dying but also for their loved ones, is critical because unresolved spiritual issues can cause people a lot of pain, Chamberlain says. "We've had patients who, despite pain medications, are still complaining of pain. In working with them, we discover that their pain is not of a physical nature, but of a spiritual nature," she says.
Chamberlain says working with a trained chaplain can help to relieve suffering in ways that medication alone cannot do. The Abramson Center has four rabbis on staff who are also board certified chaplains. Although residents on the Center's campus are mostly Jewish, the nonsectarian program also provides services to patients in the community, and chaplains are trained to work with people of any faith or no faith. Some people still have problems with the meaning of their life in a larger context, even if they don't believe in god, Chamberlain points out.
Paying attention to people's spiritual needs, which may stay rooted in tradition or may change as they face end of life, is an integral part of Holy Redeemer's care team also. "Because we are a mission-based organization sponsored by the Sisters of the Holy Redeemer, we have a high recognition of the value of spiritual care, and make sure we have the best possible spiritual care provider-to-patient ratio, Mirsch says.
Caregivers must recognize that the patient and family are at the center of the experience and it will be different for everybody. Hospice services help them to achieve peace and to prepare for end of life in whatever manner is acceptable to them. "We've often seen that people are holding on for an event or to see a certain person," Chamberlain says.
Mirsch stresses the importance of asking patients and families: "What is it that you need?" "What do you hope for?" "What are your goals?" "How can we help you to be comfortable physically, emotionally and spiritually?"
In response, patients will often say: "I wish I could ______." "I wish I had _______." "If only I could ______ one last time." And Mirsch has many wonderful stories that fill in those blanks.
"These are things people wish they would have or could have done throughout their lives, but never made the time to do," Mirsch explains. "Sometimes, if a patient is very seriously ill, those things might not be possible to do, so we help them find substitutes."
For example, a patient was upset that he wasn't going to be able to see his daughter get married. The staff and family talked about it, and rather than waiting for several months, the daughter decided to get married early. They were able to create the experience for the patient by holding a wedding on the unit, with staff members serving as ushers.
One former patient at Abramson Center had been a pilot in World War II. The staff realized that he wanted very much to fly again. They were able to make arrangements for him to go up in a private airplane for one last flight. "While he was up there he was able to take over the controls of the plane. It was really exciting for him to have that experience again, and it was exciting for all of us to help him do that," Chamberlain says.
There are countless examples of those types of special wishes granted, and there are also more simple things that the care team does every day to help hospice patients and families. When Marci Landsmann's mother, Barbara, was admitted to Holy Redeemer's hospice last year, the staff helped the Landsmanns throw a party in celebration of her life. They reserved a large, comfortable room where family and friends could gather. They decorated the room with crocheted ornaments Barbara had made, and displayed numerous family photos. They even watched a video that Marci's father made a few years prior but had never been shown.
"The party was a very nice thing they did for us, and it gave us a chance to all be together one last time," Landsmann says.
These things make such a difference in the patients' and families' ability to have life closure. "We're really trying to help people make the most comfortable, graceful and least stressful exit from life, and help them to bring some things to a conclusion before they go," says Chamberlain.
The Next Chapter
Hospice care doesn't stop when the patient dies. Good hospice care ensures a supportive bereavement program. Family members continue to be cared for by Holy Redeemer for a year following the loss of a loved one. They provide traditional support mechanisms, such as mailings and phone calls, and one-on-one counseling. They also have support groups and special memorial services.
Holy Redeemer has a "Memories on Fabric" group where family and friends can bring fabric from a loved one's clothes or other meaningful piece of material and create pillows.
"There are all different ways we help people integrate memories and what was important to them and their loved ones to make life closure as meaningful as it can be," Mirsch says.
Landsmann has not attended any of the support groups, but her father has been back to Holy Redeemer a few times. "It's nice to have a place to go where they help you through to wherever you need to be," Landsmann says. "Everyone else in the world tries to hide you from death, but this is a place where everyone speaks your language."
References for this article are available at www.advanceweb.com/LTC. Click on the "Magazine" tab, then choose "References."
Elizabeth Rosto Sitko is managing editor of ADVANCE.
Hospice Myths and Realities
Myth #1: Hospice is a place.
Reality: Hospice isn't a place. Hospice is a holistic approach to care for patients nearing the end of life which provides pain and symptom management and psychosocial support for both the patient and their loved ones.
Whether they live in their family home, an assisted living community or a long-term care facility, they want to age-and die-in place. Hospice is designed to respect that desire. For residents of assisted living and long-term care communities, hospice can provide vital resources and expertise-without additional burden on staff-to help the communities establish a true standard of aging in place.
Myth #2: Hospice isn't much more than hand-holding at the bedside of the terminally ill.
Reality: Hospice actually is much more. Hospice is an end-of-life care option that is tailored to the needs of each patient and family. A team of hospice professionals provide expert pain management, but also go beyond medical care, providing emotional and spiritual support that is an important aspect of end-of-life care.
Myth #3: Hospice care is expensive.
Reality: Families don't have to spend themselves into poverty for hospice coverage. The vast majority of hospice patients, as expected, are elderly and, therefore, Medicare beneficiaries. The Medicare Hospice Benefit is all-inclusive-covering 100 percent of the cost of hospice care. There are no deductibles and no out-of-pocket expenses to patients or their loved ones. In most states, Medicaid also provides hospice coverage. Most private insurance plans also include a hospice benefit.
Myth #4: Hospice means giving up, dying.
Reality: Hospice care is about some of the most important moments in life. Hospice aims to make life as comfortable, enjoyable and meaningful as possible. It is a total change of focus-putting patients in control and allowing them to make choices about their care. Encourage patients to consider hospice care early, so they can benefit from the full range of services for weeks or months-instead of just hours or days. Families often comment that they wish they had known about hospice sooner.
Myth #5: Hospice is for cancer patients.
Reality: Hospice provides care for adult and pediatric patients with a wide range of life-limiting illnesses, including but not limited to cancer, heart disease, stroke, lung disease, liver disease, kidney disease, multiple sclerosis, ALS, Alzheimer's, Parkinson's and HIV/AIDS.
Myth #6: Hospice care is for the very old.
Reality: People of all ages face death. Whether a patient is young or old, hospice care is customized to meet the patient's individual needs-focusing on comfort and dignity for the patient and support for loved ones.
Information provided by VITAS Innovative Hospice Care,® Miami.