FLAT ROCK, N.C. /New York Netwire/ — When Janet Bull, Ph.D., the award-winning chief medical officer of Four Seasons Hospice goes to work, it’s more than showing up for a job. She helps people find meaning. Palliative care, which occurs before end of life is at hand, comes at the vulnerable time when a person who may have chronic multiple illnesses admits they need support to maintain their quality of life.
Patients and their families need help and guidance finding their way through the maze of a complicated medical system, and reconciling their hopes for recovery with the reality of the limitations of treatments.
“My team and I guide people, collaborate to ensure their quality of life. We provide psychological and spiritual support in a way not normally seen in the medical field. Good palliative care addresses the mind, the body and the spirit,” says Bull.
The search for meaning starts with an individual’s life review.
“Who the person is, what is meaningful to them now, what has been meaningful to them in their lives is important. We put it into perspective for them, help them realize the impact they’ve had in this world.”
Understanding Quality of Life:
When patients really understand treatment options, says Bull, they tend to choose approaches which stress comfort. When one considers that 90 percent of people would prefer to die at home, but more than 50 percent die in hospitals and nursing homes, with other people taking care of them, the disparity may seem disheartening. But when they have palliative and hospice care, their life expectancy and quality of life is increased with certain diseases.
Physicians like Bull apply research which strives to understand the benefits to people at end of life, and works to improve symptoms. Sometimes, patients who previously felt powerless may choose to give back to others who share their illness, or create a legacy, through participating in clinical trials.
What should someone do if they or a family member begins to have issues with quality of life?
Bull shares six strategies for getting the support you need:
1. Reach out for support.
Palliative care is a service individuals need to reach out to receive, says Bull. They should be proactive and ask for the services, as their personal physician may or may not suggest it.
2. Make sure there’s a social worker on the team.
A social worker can counsel the family and individual as they cope with an impending loss, navigate insurance and Medicaid benefits, arrange for services like Meals on Wheels, and help get advance directives in place.
3. Palliative care involves a team of support.
Often, the social worker joins a chaplain, counselors, or other team members who address an array of patient issues from spirituality, care-giver support, alignment with available resources, or other needs. A physician, physician’s assistant, a nurse practitioner, and other non-physician providers may also be part of the team. CNAs are a critical part of the team, along with volunteers and music therapists.
4. Understand the difference between hospice and palliative care.
Palliative care can be offered to any patient with a serious illness, regardless of life expectancy. Concurrent medical care is given at the same time symptoms are aggressively managed. With hospice care one needs to have a life expectancy of 6 months or less. Both provide team based patient centered care with the focus on improving quality of life
5. Expect good communication as the norm.
Good communication with the team is a must. Family meetings or conferences with everyone invited are a positive signal that the team is working well on behalf of the patient. Questions should be encouraged, along with talk about what’s likely to come.
6. Trust the team.
Well-managed, aggressive symptom management along with good collaboration between medical professionals are hallmarks of a trustworthy team. As it’s not uncommon for some patients to have five or more specialists, the team approach makes certain the information is collated and presented to the family across care settings, and that different specialists are on the same page with medications and treatment options.
Too often, says Bull, when patients return home after a visit to the hospital, problems can occur. Medical reconciliation is a huge problem – patients often don’t understand instructions on medication changes or have difficulty obtaining new meds. Often there is no primary care physician to follow up with, or a host of other issues such as transportation, clear follow up instructions, or difficulty getting in to see their physician.
“When you’re very sick, you often don’t remember what you’re told,” says Bull. “Mistakes happen for lots of reasons when people go home.”
As a result, many people end up back in the hospital after a very short period of time. For those that get discharged to other settings, there is often a misunderstanding of goals of care.
At Four Seasons, the palliative team follows patients wherever they go. Many will be discharged to a nursing home, or assisted living facility. Having a team that provides continuity across patient settings is of great value in making sure patients get excellent care, consistent with their goals.
Janet Bull, M.D., is chief medical officer at Four Seasons Hospice Compassion for Life, which is a state leader in hospice and palliative care, serving individuals across western North Carolina. She is the 2013 recipient of the Josefina B. Magno Distinguished Hospice Physician Award by the American Academy of Hospice and Palliative Medicine, which recognize quality services and innovative programs and exemplary dedication to the practice of palliative medicine in a hospice setting.
For more information, visit: http://www.fourseasonscfl.org/ .
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