Post 8: I Want the Best Care Possible for ME - Part 2 of 2
Updated: Dec 16, 2022
The best care possible for a person is guided by how well they communicate what is most important to them to their family, closest friends, and medical providers (Read Post 7: I Want the Best Care Possible for ME - Part 1 of 2).
Dee smoked a pack a day for years, finally quitting when she caught her granddaughter attempting to sneak away with one of Dee's cigarettes. "We made a deal. She wouldn't pick up another cigarette, and I wouldn't pick up another cigarette. She's so smart. She wants to be a registered nurse."
Dee also had advanced chronic obstructive pulmonary disease (COPD). The palliative care team met her during of one her hospitalizations for COPD flare (Read Post 1: What Exactly Does a Palliative Care Specialist Do?). "The hospitalizations don't bother me. They're like mini-vacations. I get good care here. And when I get out, I feel great! I play with my grandchildren for a couple months. I wish it were longer, but I know I don't have great lungs. You say I've been in the hospital four times in the past seven months?" Dee shrugs, "Maybe. It's working out okay for me."
Dee makes four more hospital visits for COPD flare over the next year and a half.
The palliative care team meets with her during a couple of those hospitalizations, and Dee maintains that her goals of care are the same. Dee would accept as much aggressive medical treatment in the hospital as necessary with the goal of returning home, where she could enjoy her family. The benefit of hospitalizations outweighed the burden of hospitalizations.
Then Dee hits a bad winter. Dee visits the ER, sometimes requiring admission into the hospital, every three to four weeks for severe COPD flares. "But I don't feel much better when I get home. I can't walk two steps without having to sit and catch my breath. I don't want to live like this."
"What is most important to you now?"
"Now? Now, I just want to return home and stay home. I've had enough. I don't want to go back to the hospital. But I don't want to feel like I'm suffocating either. That's when I have to call 911. It's like a never ending carousel from hell, and I can't get off."
Dee learns that she can get medical help at home if her focus is on comfort. "Huh. I never thought about hospice." (Read Post 2: Five Major Ways Palliative Care Differs from Hospice.)
Dee is discharged from the hospital with hospice support at home.
Dee returns to the emergency room (ER) one time when her grandson dropped by his grandma's home to say hello, saw his grandma struggling for air after a trip from the bathroom, panicked, and called the paramedics.
When Dee is able to comfortably talk for herself, she adamantly refuses to be admitted into the hospital. The ER staff contacts Dee's hospice program, and Dee is discharged back home with hospice support to continue at home.
The hospice team re-educates Dee and her family to call the hospice nurse, instead of 911, for any questions or emergencies.
With attentive care at home, Dee enjoys more time at home without any severe COPD flares for the rest of the winter. She has almost daily visits from her grandchildren. Her daughter temporarily moves in to help with physical care and chores around the house.
Dee dies seven months later in her home as she wished.
Dee's values and goals of care changed over time as her health situation changed. When COPD was not significantly impacting her day to day life, her goals were to live as long and as actively as possible, even if this required hospitalizations for sudden COPD flares.
When COPD worsened to the point that it significantly affected her quality of life and day to day ability to function, Dee's goals were to focus on comfort and ease at home, preferring to have medical care for comfort (hospice support) brought to her at home rather than returning to the hospital for another COPD setback. She wanted to die at home - "when it's my time" - with hospice support already in place to make that happen as smoothly as possible.
A person's goals of care can change over time as their values, priorities, medical disease, or health situation changes.
These values and goals should be the compass that guides a person's healthcare decision making (read Post 54: Why Should I Care about My "Goals of Care?").
When Bee was diagnosed with aggressive breast cancer, she said her greatest motivation to fight was her six year old daughter. "I'm fighting to have more time with her."
Bee agreed to cancer therapy because she knew the potential benefit of more years with her daughter outweighed the potential burdens of any uncomfortable side effect and continuous efforts to amend her weekly and monthly schedules to revolve around managing her disease.
Bee spends her "good days" hiking in the nearby mountains on flat paths with her daughter. "That's my happy place."
Two years later, Bee is having a tough time. Her body is not tolerating the latest cancer therapy. She is spending more time in the hospital than at home for weakness and fatigue. Her legs are too heavy for her to move on her own.
Bee's oncologist asks the palliative care team to meet with Bee.
"I can give Bee more cancer therapy if that's what she wants. She hasn't been tolerating it...but I can give her more if that's what she wants."
"What's her prognosis?"
"Honestly, I would say weeks to limited months. But she doesn't want to talk about that so I would be careful discussing it."
The palliative care team meets with Bee, whose body becomes animated and face lights up as she speaks about her eight year old daughter. "I want to be with my daughter as much as possible for as long as possible. She is the reason I’m doing everything I'm doing."
The palliative care team suggested setting up the maximum available medical support at home to maximize the chances that she could remain at home with her daughter for as long as possible.
"Let's give your body time to recover from cancer therapy. You can go home with hospice support, which is the maximum available medical support at home for comfort. If your body were to get stronger, you could later revoke hospice and call your oncologist for more cancer therapy."
“The program sounds great, but it’s that word. The word ‘hospice’ sounds scary.”
Bee considers a rehabilitation facility, home health physical therapy, and hospice support at home. She decides to try home health physical therapy again. She is discharged home with home health support.
Bee returns to the hospital 30 hours later due to her requiring more physical care than her husband alone can provide.
After multiple meetings with palliative care, where Bee essentially shares her experiences of the last two years and her emotions and what she hopes to leave behind for her daughter, Bee decides she will try hospice support at home. "I want to be able to stay home this time. I miss my daughter."
Bee is discharged from the hospital with hospice support at home, and she never returns to the hospital.
Bee spends her all of her alert moments with her daughter before dying at home eight weeks later.
Keeping Bee’s goals of care and values in mind, to be with her daughter for as much and as long as possible, the treatment plan changed as Bee's medical and physical condition changed.
When Bee was first diagnosed with cancer, it had made sense to pursue aggressive therapy in an attempt to gain more years with her daughter. It no longer made sense to pursue the same medical plan if cancer therapy was keeping her in the hospital, away from her daughter.
When her medical and physical conditions changed, maximizing medical support at home where Bee could be with her daughter made the most sense.
A person's goals of care, values, and priorities may stay constant even as their medical disease, health situation, or physical condition changes.
These changes in health and prognosis may mean a person will have to get off their current medical path, the path that is leading them away from their goals, and choose a different path in order to meet their goals.
Learn from Dee and Bee:
1. At any stage in life with serious disease or severe illness, evaluate what is most important to you and what you hope to achieve.
2. Ask your healthcare team how to achieve what is most important to you.
3. Be prepared that you may have to find the courage to step back and re-evaluate the path you are on.