When a person has a serious, life-limiting illness, their health care needs often start adding up. From the management of symptoms, to navigation of the health care system, to grappling with the meaning of life and everything in between, additional support can improve quality of life. Loved ones may also need support with understanding the medical treatment, dealing with caregiver stress and planning for the future.
Palliative care and hospice teams can provide this additional support.
What Is Palliative Care?
Palliative care is a specialized form of medical care designed to improve quality of life for people with a serious illness that limits life expectancy or quality. This type of care is available to a patient of any age and at any stage of the illness.
“To palliate means to ease suffering, and that is what our role is, to help patients navigate the challenges of serious illness and to ease their suffering and the burdens of that illness,” said Kelsey Terland, MD, of Samaritan Palliative Care. “When we think about suffering, we often first think of pain, and symptom management is certainly one of our objectives, but palliative care is bigger than that. It’s really about taking care of the whole person – body, mind and spirit. Palliative care can come along disease-directed treatments, such as chemotherapy, to provide additional support.”
Palliative care teams are comprised of experts in different fields – doctors, nurses, social workers and chaplains, among others – who come together to support a patient and their families during serious illness.
Support for the Burdens of Disease
While anyone with a disease that impacts their quality or length of life would qualify for palliative care, there are some conditions that tend to have more burdensome symptoms, such as cancer, heart disease, lung disease or dementia, for example. For these illnesses, having an extra layer of support from medical experts may benefit the patient.
“Our team takes the time to ensure that a patient and their families have a good understanding of their diagnosis and prognosis. Members of the team can help them know what resources are available. We spend time exploring who each person is and what is most important to them to best understand their goals for their medical care,” said Dr. Terland.
Palliative care serves patients in the hospital as well as in the community.
“When a patient is hospitalized, hospital staff are working to treat the acute problem that got the patient into the hospital with the goal of getting them better and back home. As a consulting team, palliative care takes the 10,000-foot view of a person with their serious illness. We are able to spend time with a patient to find out their hopes and concerns,” explained Dr. Terland.
Community-based palliative care within Samaritan Health Services is currently only available to patients who have symptomatic heart failure and live in Linn County.
Because everyone’s needs are different, each palliative care plan is customized to the individual.
“Sometimes, a patient may tell me they intend to do everything they can to fight the disease or prolong their life, and another may say they’re tired and done with further treatment – people’s goals for their care differ, and we tailor their medical care accordingly at each stage of the process,” said Dr. Terland.
Timing of Palliative Care
The time to request palliative support also differs for everyone. But there are some overall guidelines, noted Dr. Terland.
“When the burdens of an illness are starting to add up and quality of life is impacted, when people feel they need a transition in their care but don’t know how to do that, or when a patient has increasing symptoms and needs more support to manage those symptoms -- these are some points when palliative care can be helpful,” Dr. Terland explained.
Most often, palliative care will be requested by a patient’s physician, their cardiologist or oncologist, for example. But a patient or family member can request a palliative care referral from any of their medical providers.
Once a patient is under the care of the palliative care team, support can last for short periods of time while someone is hospitalized, or for months or years in an outpatient setting.
If a patient is at the point of no longer taking aggressive medical treatment and nearing the end of life, they can transition to a different form of palliative care called hospice.
What Is Hospice?
“Like palliative care, hospice also focuses on managing symptoms and optimizing quality of life,” said Emily Looney, MD, medical director of Samaritan Evergreen Hospice. “However, hospice is uniquely designed for people who are likely in the last six months of their life, and for whom aggressive medical treatments are no longer wanted or no longer helpful.
“People choose to switch to hospice so that medical care and team-based support come to them in their home and they can avoid hospitalizations, regular office visits and lab draws,” Dr. Looney said.
People often have the misconception that hospice is a place. While Samaritan does have a 12-bed hospice house in Albany that accepts patients for short-term care, most hospice support is provided in the patient’s home, however they define it – at a friend’s house, in a nursing home or other facility or in the patient’s private residence.
“Hospice is a visiting interdisciplinary team that helps manage a patient’s symptoms, optimize comfort, and address the psychosocial concerns of patients and their families at the end of life,” said Dr. Looney.
This team includes nurses, physicians, and nurse practitioners to adjust medications and address other health care needs; hospice aides to provide bathing and other personal care; social workers to coordinate caregiving and resources, provide counseling and intervene in crisis situations; and chaplains to offer nondenominational spiritual support. Bereavement counselors are also available to loved ones after a patient has died.
Make Every Day the Best It Can Be
“The goal of hospice is to make every day the best it can possibly be,” said Dr. Looney.
“For many people that means prioritizing physical comfort to ensure that pain, shortness of breath and anxiety are proactively addressed,” she said. “Often, too, hospice will help patients conserve energy so they can spend time with family, take a special trip, or focus on meaningful activities such as life review. Every patient’s hospice plan looks different, depending on their individual goals.
” Hospice neither hastens nor delays death, Dr. Looney stressed.
“Involving hospice is not giving up, but rather shifting the goals and priorities for a patient’s medical care,” she said.
When Is Hospice Care Appropriate?
While it can be difficult to predict where someone is in their journey with a disease, Dr. Looney noted that there are several signs that someone may be approaching the end of life and could benefit from hospice support.
“If a person is having a hard time managing their symptoms and disease without frequent trips to the hospital, doctor’s office or emergency department, this can point to medical fragility indicating that they are nearing the end of their life,” she said. “Functional decline – spending more time sitting or lying in bed – and burdensome symptoms such as pain and shortness of breath with minimal activity - can also be a strong predictor of life expectancy. Sustained weight loss, recurrent infections and falls are other signs that a patient may be eligible for hospice.”
More Time Spent With the Patient
Getting to know a patient and their goals for care requires more time than the average visit to the doctor’s office allows, something that is notably different in palliative care and hospice.
“In palliative care, I would typically ask a patient to tell me their hopes and worries about their disease,” said Dr. Terland. “I’d ask, ‘What are the things that if you couldn’t do them anymore, that would change how you want your care?’ Or, ‘What are the things you’re willing to go through with the hope of more time?’ This conversation takes time, and their answers help to shape our care plan.”
The same is true for hospice, said Dr. Looney.
“Typical nurse visits to a patient’s home may be two hours in length, up to several times a week,” she said. “Some patients and families want privacy and would prefer only minimal contact from hospice staff if their plan of care is stable, but others want the opportunity to get to know their support team and for the team to get to know them.”
Additionally, the hospice team is available 24/7 to respond to emergencies and advise patients and family members about symptom management.
Costs of Palliative Care & Hospice
Coverage for palliative care varies by medical insurance plans. Many private insurers, as well as Medicare and Medicaid, cover palliative care, although there may be conditions, co-pays and deductibles, so be sure to talk with your insurer for details.
“When someone elects hospice and is no longer pursuing curative treatment, hospice is covered at 100% by Medicare and many other insurers,” said Dr. Looney.
That coverage includes medications treating symptoms and addressing the diseases causing a limited life expectancy; medical equipment like hospital beds, wheelchairs, and oxygen; personal care supplies and the costs of professional staff.
Always consult an insurance professional to be sure your plan covers your particular case.
Help for Your Unique Situation
No matter where a person is in their journey with a serious disease, the experience can be lonely, painful and frightening. But Samaritan’s palliative care and hospice teams can help ease these burdens by providing the support and resources that people need in times of medical crisis.
Medical Director Kelsey Terland, MD, oversees Samaritan Palliative Care, a multidisciplinary team supporting patients with serious illness. You can reach her at 541-812-5020. Medical Director Emily Looney, MD, oversees Samaritan Evergreen Hospice, and also sees family medicine patients on a limited basis at Samaritan Family Medicine – Geary Street. Contact her at 541-812-4662.