“How long do I have to live?”
It’s one of the hardest questions to consider for those with advanced, incurable diseases, such as terminal cancer. But it’s a question that deserves the most honest and accurate answer possible. The prognosis for each individual is different with factors such as age, genetic markers, functional ability, and other variables affecting individual outcomes. But one thing is certain; everyone deserves the best quality of life possible, regardless of the answer to this question.
No one can truly know how to handle the mixture of emotions that arise after receiving a terminal diagnosis. Patients faced with having days, weeks, or months left to live want to spend that time with their families and loved ones. They want to remain mentally acute and experience the touch of others. What they do not want is to be an emotional or physical burden to their families.
For millions of people throughout the United States, hospice may be the answer. “Hospice is a special kind of care provided to patients and families during one of life’s most sacred journeys. Each patient’s journey is unique to that individual. It’s our commitment to treat each person with dignity, respect, and grace,” says Lisa DiLuigi, Certified Hospice and Palliative Care Nurse and Director of Legacy Hospice of the Piedmont.
DiLuigi says, “Patients eligible for hospice have a life expectancy of 6 months or less if the disease runs its natural course. Hospice manages patients with life-limiting illnesses whose goals are no longer to seek curative measures, but to have the highest possible quality of life for as long as they have left.”
Hospice focuses on several elements to ensure a patient’s, as well as their family’s comfort. A multidisciplinary hospice team including physicians, nurses, therapists, social workers, spiritual leaders, and volunteers, offer support and guidance for family members before and after a patient’s passing. “Everyone involved in our organization, from nurses and doctors, to volunteers, clergy, and our administrative staff is very passionate about managing patients at the end of their lives,” DiLuigi says. “It is a sacred time and everyone who works with us or is a part of our team is committed to providing the highest level of end of life quality care and support to our patients and their families.”
In hospice, easing discomfort (or providing palliative care) is a primary focus. A physician who specializes in palliative medicine leads the multidisciplinary team and treats pain and discomfort with medications and other resources uniquely tailored for the individual patient. Getting the family involved is also an important part of hospice care. Families are encouraged to provide support, comfort, help, and to be involved in the patient’s daily activities. Family involvement can benefit the patient as well as family members. With the help of the hospice team, families can understand what happens to people when they are dying.
The Palliative Approach
While not hospice care, palliative care and hospice care often correlate. Palliative medicine is defined as treatment used to relieve discomfort when there is no curative solution for an illness.
For patients who receive a terminal diagnosis and do not wish to “aggressively treat” their disease, palliative care can offer better quality of life by providing comfort, symptom management, and options for less invasive treatment that may slow the disease process while protecting quality of life.
Full disclosure is critical for patients after receiving word that their disease is incurable. Studies have shown that patients nearing the end of their lives are less likely to choose an aggressive treatment when they understand the reality of the disease. A complete understanding also leads to less anxiety and less stays in intensive care units.
It’s important that patients facing end-of-life decisions have an open and direct line of communication with their healthcare provider and their caregivers. A terminal diagnosis creates a rollercoaster of emotions running the scale from anger to fear. A clear understanding of the diagnosis, the probable progression of the disease, and the likely timetable along with open and honest communication is key.
A patient’s personal goals are a critically important component of the treatment decision-making. When faced with limited quantity of time, the most important thing is the quality of that time.
Hospice Care vs. Emergency Care
How often is the emergency room (ER) used at the end of life?
A study conducted by Alexander K. Smith, a palliative medicine doctor at San Francisco VA Medical Center and an assistant professor of medicine in the Division of Geriatrics at University of California, San Francisco stated that adults over the age of 65 visited the emergency room at least once during the last month of their lives. Three quarters of those ER visits led to a hospital admission with more than two-thirds of the patients dying during their stay.
In comparison, the study discovered that the 10 percent of study subjects who were in hospice care at least one month before passing, were much less likely to have visited the ER or died in the hospital.
Smith’s primary goal, as is the goal of any palliative doctor, is to improve the quality of life of patients. Emergency rooms are not built for end-of-life care. Hospice offers specialized care for patients nearing the end of their lives.
Emergency room visits and hospitalizations can be very expensive. Hospice is 100 percent covered by Medicaid and Medicare with no out-of-pocket costs. It is also covered by most health insurance policies.
A hospice care team specializes in providing relief, not only from physical pain, but from spiritual and psychological pain as well. The team also provides support for grieving families before and after death. Hospice care can be provided in the patient’s home.
More than just health care, hospice is about compassion. The actions of individuals, who dedicate their lives to making the last moments of a terminally ill patient’s life more comfortable and provide the family with a strong support system, are what define compassionate care.
Choosing the right hospice provider is about finding a team who treats patients and their families with love and a genuine spirit of life. No matter the challenges facing patients, goals and needs are still a part of life. Hospice is centered on helping a person accomplish as much as they possibly can in the final stage of life. Hospice is also about bringing families closer together, with special emphasis placed on enhancing the patient’s quality of life. A major benefit of hospice is that it removes the juggling of all the different aspects of life-care out of the hands of the family who simply want to enjoy the moments that remain.
For more information about hospice care or to become a volunteer, contact Legacy Hospice of the Piedmont at 434.799.5313 or toll free at 855.799.5315. Legacy Hospice of the Piedmont is the area’s only healthcare provider that operates solely as a hospice. Legacy provides hospice services wherever indicated including at your home or in the hospital.