A reality of life is that one day it will end.
As service members and their families deal with chronic or terminal illnesses, they must make difficult decisions about end-of-life care.
Kimbrough Ambulatory Care Center and the Hospice of the Chesapeake provide expertise and assistance to help military families care for loved ones as they manage a chronic illness or prepare for death.
Dr. Swati Desai, a physician at Kimbrough, is an internist who treats patients with multiple chronic conditions including hypertension, diabetes, heart disease (coronary artery disease, heart failure, atrial fibrillation), chronic obstructive pulmonary disease, chronic pain ailments and cancer.
Desai’s patients, who are mostly retired service members, range from ages 65 to 105.
Hospice of the Chesapeake, a nonprofit based in Pasadena, provides “physical, psycho-social and spiritual support services to individuals living with and affected by advanced illness,” according to its website.
Twenty-five percent of its patients are military veterans.
Fort Meade service members participate in Hospice of the Chesapeake’s Honor Salute program by visiting the homes of veterans in hospice care to “conduct a formal ceremony of recognition and appreciation for their military service,” according to its website.
Service members from Fort Meade have also conducted Honor Salutes for Hospice of the Chesapeake’s annual Welcome Home Vietnam Veterans Day ceremony.
Hospice of the Chesapeake provides hospice and palliative care.
“When a cure is no longer possible, hospice offers various levels of care for patients to manage their pain and symptoms with comfort and dignity as well as living life to the fullest extent possible,” according to the website.
“Palliative care is specialized medical care that focuses on reducing the symptoms, pain and stress caused by serious illness whatever the diagnosis. It is appropriate at any age or stage of illness and can be provided alongside curative treatment.”
Dr. Rudolph Willis, the hospice’s medical director, and Genevieve Lightfoot-Taylor, a hospice and palliative care nurse practitioner, presented a seminar about end-of-life decisions in April at the Glen Burnie Library.
As a primary care doctor, Desai is responsible for initiating testing that can lead to the diagnosis of a terminal illness. The final diagnosis is made by a specialist.
“Once the diagnosis is made, say of cancer, it may just be the initial state when a cure with treatment is possible,” Desai said. “So we as primary care doctors help deal with the anxiety and depression that goes along with the diagnosis. We may initiate medication or refer them for counseling with a psychologist.”
Dr. Mark Fisher, a psychologist and internal behavioral health consultant at Kimbrough, said patients can experience a roller coaster of emotions after a serious diagnosis.
Willis said once a person has been diagnosed, it is important for the patient and family members to openly discuss the next steps for care and treatment.
“The family should inquire early about how management of symptoms of disease can improve both the quality and quantity of survival,” he said. “It is important to determine who will make decisions for the patient’s care before the patient is unable to do so.”
Lightfoot-Taylor said she gently guides patients and their families to the appropriate level of care after a diagnosis.
“I assist patients and families with looking at the big picture regarding their health and help them to fill out a Maryland Orders for Life Sustaining Treatment form to develop a realistic plan of care that meets their needs,” she said.
Once a health problem becomes terminal and death is imminent, hospice care takes over, Desai said.
Hospice care is determined by the expected survival of the patient.
“After an evaluation, if the patient is expected to live less than six months, then hospice care would be appropriate,” Willis said. “A few states allow up to an expected one-year survival.
“The goal for hospice is qualilty of life and symptom management, with the expectation that the patient’s illness is incurable and terminal.”
Kimbrough has nurse case managers who help to coordinate care with civilian providers to arrange home care or hospice care. The facility’s behavioral health staff can help patients deal with their emotions after a diagnosis.
Fisher, who has counseled service members and veterans who are facing a chronic or terminal illness, said their most pressing concern is for their significant others — how they are doing and if they being cared for.
Lightfoot-Taylor listed other concerns as well: the desire not to be a burden to their loves ones; the need to have their symptoms managed to prevent pain and undue suffering; and have family members understand what they are going through.
Fisher said discussing end-of-life decisions can be hard to do, so family members and caregivers should “listen first and talk second.”
“The patient in question will need to guide others in how to process emotions at their pace and in their own way,” he said. “The exception would be when a patient is unable to readily process and express emotions.”
Willis said the decision to begin hospice or palliative care can have a “significant impact” on family relations, financial issues and existential concerns.
“The greatest difficulty family members face is burnout,” he said. “Hospice allows respite care of the patient by a clinical team away from the home to allow the family to have some relief from the intensity of watching a loved one go through the dying process.”
Several companies and organizations provide respite care for the caregivers of veterans. Respite care allows caregivers a break from tending to their loved ones so that they can stay well themselves.
Fisher said it is important for family members and caregivers not to neglect their own well-being.
“If they are no good and cannot care for themselves, how can they care for their loved one at the top of their game?” he asked.
Willis said that proper education and resources can help families navigate this difficult time of life.
“Chronic illness and incurable illness can be formidable to deal with,” Willis said. “But it does not have to be terrifying or devastating if you seek out the kind of support and expertise provided by those trained to make the event more tolerable and easier for all involved.”