Post 7: I Want the Best Care Possible for ME - Part 1 of 2
Updated: Jul 12
Lou receives the same cancer diagnosis as May.
Both sit with their oncologists and listen to proposed radiation and chemotherapy treatments. Both start their radiation treatments the following week. A month later, each feel pain relief from radiation shrinking the tumor that had been pressing on their back.
Later, Lou starts his first cycle of chemotherapy, and May accepts hospice support at home.
Both believe they are receiving the best care possible. What happened?
Lou and May each deliberated on what was acceptable quality of life for them, the potential benefits and burdens of each treatment plan, the average prognosis or life expectancy of people with the same disease as theirs, and their biggest values, priorities, and goals of care.
They asked themselves the following questions.
These are questions a person should ask themselves whenever a big change occurs with their medical or health situation.
1. What are my most important values?
"Being able use the bathroom on my own. I'm big on being able to wipe my own butt."
"Being able to make decisions for myself. I need to have my own mind."
"I need to be a role model for my kids. I need to show them what it looks like to keep fighting."
"I need to stay home and stay out of the hospital so I can actually be with my kids."
2. What am I fighting for?
"I'm fighting to work until I can't work anymore, so I can save up enough to buy my stepson a new baseball glove."
"I'm fighting to stay alive to meet my first grandchild. She's due in five months."
"I'm fighting to have the strength to walk my daughter down the aisle."
"I'm fighting to have more years with my son. He's only two. Do you think he'll remember me?"
3. What do I hope to maintain or obtain?
"I want this back pain gone so I can start driving again."
"I just want to be able to walk again, even if I have to hold onto something."
"I hope I can stay out of the hospital. I'll listen to the doctors this time, and I won't wait if I start to get short of breath."
"I'm working hard to get out of rehab. I want to be able to smoke a pack whenever I want."
4. What is most important to me?
5. What is the minimum I need for an acceptable quality of life?
"I have to be able walk around and care for myself, even if I have to use a walker. I want to do it on my own."
"It's okay if I'm bedbound as long as someone takes care of me and I'm safe."
"I don't want new holes in my body. I want to be able to eat through my mouth only."
"I need to be able to appreciate the sunset every evening."
6. What do I want to accomplish if I were to have limited time?
"To transfer my house to my son."
"To see my family all together at least this Christmas."
"To ensure my two daughters - they're both mentally disabled - will be taken care of by someone I trust."
"To teach my wife how to use the thermostat. We have a smart home, and technology confuses her."
7. What will give me peace of mind?
"That my doctors will listen to me and take care of me."
"That my children are okay." ("Okay" is defined differently by each parent - "situated with their careers," "financially," "that they have someplace to live," "that they find someone to settle down with," "that they know that I'm okay with dying.")
"That my spouse is okay." ("Okay" is defined differently by each spouse - "financially situated," "that they receive physical help around the house," "that they are not overwhelmed with grief and depression and are able to move on")
"That I got my affairs in order."
The answers to these questions form a person's goals of care. The goals of care should direct the path of their healthcare.
Lou and May had different goals all along.
Lou is a 45 year old man, the father of three children and husband to a dental hygienist. He enjoys his work as an accountant. He has two goals of care.
"I want to be able to sit through a family dinner and not have to lie down midway because I'm in so much pain. I want to be able to talk to my son without snapping at him because I'm in so much pain. I used to coach soccer, and now I need help pulling up my pants! I don't need the pain to go away. I just want it to stop taking over my life."
Lou's other big goal is to live as long and actively as possible so he could remain with his family for as long as possible. He considers the time, expenses, and coordination involved in receiving chemotherapy, as well as potential physical and mental side effects. He knows the potential benefit of more years with his wife and children outweighed all of that. "I want to be in their stories."
He says "yes" to chemotherapy.
May is a 77 year old woman, widowed for three years, mother to two children, favorite grandmother of her only granddaughter, and treasurer of the city garden club. May also has two goals of care.
"I have no regrets. I'm ready for God to take me back whenever he says it's time. It's been a long time since I've seen my husband." May knows she wants to spend the rest of her days in her home and in her garden with visits from her children and grandchildren. "I don't want to spend all the time I have left at the cancer center!" "And I have to organize my brooches that I promised my granddaughter. I can't do that if I'm puking all the time."
May's other big goal is pain relief of her back so she could resume day to day activities such as getting dressed and bathing on her own as well as tending to her garden.
When May realizes how much time would be spent outside the home with oncology follow up appointments and receiving chemotherapy at the infusion center, she replies, "What's option B?" She considers the potential side effects described by her oncologist, especially concerned about fatigue and nausea that could take away from her quality of life.
She says "no" to chemotherapy and cancels her follow up oncology appointments. After four months maximizing her time with family including a family reunion on an Alaska cruise, May says, "I'm getting weaker. If I ever have to go to the hospital, I won't make it back home."
May then says "yes" to hospice support at home (Read Post 2: Five Major Ways Palliative Care Differs from Hospice).
Though the treatment plans were different for Lou and May, they both believed they were receiving the best care possible. The treatment plans were tailored to their own unique goals of care. Their goals helped them to decide what treatment plans to accept or decline as they learned about the potential benefits and burdens of each treatment plan.
Their goals of care acted as their compass in guiding the direction of their healthcare.
The best care possible is not always the evidence based medicine found in the most up to date disease management guidelines.
The best care possible is the medical care - surgery, procedure, dialysis, feeding tube and artificial nutrition, radiation, medication, intravenous (IV) fluids, physical therapy, speech therapy, hospice support, or simply monitoring - that helps a person achieve their goals of care based on their values and priorities.
How does a person ensure the best care possible?
1. Determine their most important values, priorities, and goals of care.
2. Communicate their goals of care and values to their family, closest friends, and medical providers. Communicate them every time a new medical treatment is offered.
Hoping for the best is not an action plan.
Communicate what is most important to you, then communicate it again (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2).