The Special Nature of Palliative Care
By Linda Jager, M.D., Palliative Care Specialist
Are you or someone you love facing a serious chronic or terminal illness? A new specialty of medicine may be just what you need. The goal of our Genesis team is to improve the quality of life for both patients and their families.
Palliative Care’s focus is on treating people suffering from symptoms or stress that accompanies serious illnesses such as:
- Congestive heart failure
- Chronic obstructive pulmonary disease (COPD)
- Kidney disease
- Parkinson’s disease
- Other various diagnoses
Often these patients suffer with pain, depression, shortness of breath, and fatigue. The palliative team specializes in treatment of these symptoms.
A Deterioration of Health
Karen knows firsthand the stress associated with caring for an aging mother. “My mom Mary was 85 years old and had been totally independent in her home, doing her own cooking, managing her bills, and driving around town to friends’ houses to play cards.”
Life changed two years ago when Mary’s health suddenly deteriorated. “Mom called me one morning when I was on my way to work. She said, ‘I am really short of breath, Karen, and you need to take me to the hospital NOW.’"
Mom had not been feeling quite herself for several days, having to rest after walking out to get the mail, and had noticed her legs were swelling more than usual. In the emergency room, the doctors said she was in Congestive Heart Failure and they admitted her to the ICU.
“It was scary to see mom that sick and admitted to the ICU—she had always been so strong. That is when I first met the Palliative Care Team. I was so overwhelmed and grief stricken that I wasn’t sure I wanted another group of people seeing her."
"She already had so many doctors. To be honest, I understood little of the medical language they used to explain Mom’s condition, and I couldn’t focus enough to ask questions. The alarms, beeps, monitors, and wires all scared me to death. But Denise, a Nurse Practitioner with the Palliative Care Team, sat down with me and just asked how I was doing, what I understood to be wrong with my mom, and what I understood the plan to be going forward."
"She knew my mom’s complete medical and personal history. She proceeded to explain to me, in language I actually understood, what was wrong with my mom. She filled in the gaps and helped me find the questions I wanted to ask the doctors."
A Team Approach
Linda Ann Jager, M.D.
Palliative Care is a team approach in which doctors, nurse practitioners, nurses, social workers and chaplains work together to provide an extra layer of support to the patient. It is appropriate at any age or stage in a serious illness and is given along with curative therapies. Communication is key when faced with a complex medical problem, and our team spends the time necessary to communicate with you, your family, and your other doctors.
“She also asked me and my brother what my mom would want done in case her condition worsened," Karen said. "Would she want CPR or to be placed on a ventilator? My brother and I were stunned. We had NEVER discussed this with Mom. We really had no idea what she would want and at the moment, Mom wasn’t able to discuss it.”
Our team offers information and assistance with discussing advanced care planning including power of attorney for health care and resuscitation status. There is a real benefit for both the patient and the family to have this difficult discussion prior to a crisis. If we make these decisions in advance, and discuss them with our family, not only do we have our wishes outlined, but we take the burden from our family.
The Palliative Care Team can assist with completing an IPOST (Iowa Physician Orders for Scope of Treatment), which specifically delineates what life sustaining treatment the patient wants in the event the patient cannot voice those decisions.
Mary eventually got much better in the hospital but remained very weak. With the help of the Palliative Care Team, Mary agreed to short term skilled care in an area facility to ensure she’d be able to function at home when she returned there. Linda, the Palliative Care Social Worker, found just the right placement for Mary.
More Than Just Medical Care
Palliative Care offers family meetings and helps to ease the discussions between the patient and family members about overall goals and what types of care are best for an individual. We all have a different view of quality of life. What is important to one patient may not be important to another.
Our goal is to listen to patients and develop an understanding of what quality of life means to them, and then convey this to family members and other members of the medical team.
Mary’s illness put stress on Karen’s life as well. She remembers, “I worried about mom all the time. What if she fell? What if no one knew for hours? I found myself snapping at my kids and husband. I wasn’t sleeping well. Anita, the palliative care nurse who visited mom, talked to me and was the first to notice my distress. She helped me by suggesting healthy coping mechanisms. It’s still hard, but I’m doing better.”
Caregiver burnout is a big problem. According to a Pew Research Center poll, nearly 40 percent of American adults care for someone with a serious health issue, and this number will continue to climb with an aging population. Palliative Care brought a sense of comfort to Karen.
Anita called Mary’s Primary Care Provider and asked if he’d order Visiting Nurses to see Mary to monitor her meds and weight. She was also able to get services to assist Mary with bathing, cooking and light cleaning. This gave Karen a break and allowed Mary her independence of living at home.
Karen noticed that her mom started to act withdrawn, cancelling her weekly card games and politely refusing invitations to go out for lunch with her friends. Karen called Teri, the Outpatient Palliative Care Nurse Practitioner, with her concerns.
A Personalized Plan of Care
Teri went to Mary’s home to assess her psychological status and ascertained that Mary was depressed. Mary explained she didn't have the energy she once had and how she didn't want any of her friends to feel sorry for her.
Teri spent time with Mary, developing a plan to conserve her energy for activities she truly enjoyed--like playing cards--and then called her Primary Care Physician with her concerns about Mary’s depression. Her provider then scheduled an appointment to see Mary to evaluate her for addition help.
“The team was doing what was necessary to help my mother, and along the way, they helped me and my entire family,” explained Karen. “They were compassionate and really listened to my mom and my family. I think it really helped me and my mom not to give up.” Karen add that she felt comforted by the whole-person approach that the Palliative Care team brought to her and her mother.
“As we journey through a serious illness, we often need different levels of care, and the Palliative Care team can help you determine the right level of care. We help families develop realistic plans to cope with the burden of disease,” explains Linda, the social worker on the Genesis team.
“Many times our team is asked how we can do what we do every day. To be honest, sometimes our days are hard, especially when all treatment options have been exhausted. But our job is to find creative ways to help relieve suffering, and to walk with our patients and families on whatever path there illness takes."
--Dr. Linda Jager