Post 54: Why Should I Care about My "Goals of Care?"
Honestly, you really do not need to know the definition of the healthcare phrase "goals of care" in order to advocate for the best possible medical care for yourself or your loved one (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2). However, I think knowing the differences between "goals of treatment" and "goals of care" may make it easier for people who are advocating for high-value medical care for themselves or their loved ones to recognize when they are potentially being led astray by the myriad of medical options that exist in America.
The goal of a treatment is the purpose, or point, of the treatment. Most healthcare providers feel comfortable discussing this because it is essentially the healthcare provider explaining what a particular treatment is supposed to do. Most patients feel comfortable asking about it because it is a straightforward question - "What is this treatment supposed to do?"
- "This pill is a laxative, and it will help you poop."
- "These physical therapy exercises are supposed to strengthen your shoulder and reduce your arm pain."
- "The point of the surgery is to remove the blockage in your intestine."
Many times an explanation of the goal of a treatment is all we need to make a healthcare decision because we have a fairly straightforward medical issue, and the treatment makes sense in the context of what we want.
- "Constipation is uncomfortable, and I want to get rid of it. I'll take the laxative."
- "I want to be able to use my arm again, so I'll work hard with the physical therapist." - "I'm on board for surgery to get rid of this intestinal blockage. I want this horrible pain to go away, and I want to be able to eat again."
However, there may come a point when strength is worsening, health is declining, or disease is progressing, and a person may wonder if they are missing some piece of information. They may be fully informed of the goals of their treatments but still feel as if they are not exactly receiving the medical care that they want.
- "I don't think the infusions make a difference with his MS (multiple sclerosis). He just keeps getting weaker, and each clinic visit wipes him out. Should we keep going?"
- "The chemotherapy pills cause horrible nausea and diarrhea almost every day, and my cancer isn't even curable. Why am I putting myself through this?'
- "This is the third time I've had to call 911 for shortness of breath, and I hate it. I hate coming back to the hospital, but I don't want to stay home when I feel like I'm suffocating. I feel stuck, trapped, and lost. I don't know what to do."
It is in these times of uncertainty when discussing goals of care in addition to goals of treatments can be helpful. The goals of care are the quality of life, primary life aim, and/or health priority that a person hopes to achieve through the medical care they are receiving. This medical care includes all the medical treatments they choose to undergo or decline.
- "My husband wants to focus on ease and calm. Struggling to make these neurology appointments, especially since it has become so much harder to transfer him to the wheelchair, is the opposite of ease and calm. We're going to hold off on these MS treatments that are making no difference in his strength and quality of life and focus on comfort at home."
- "My priority is having as much meaningful time with my kids as possible. That means trying to live as long as possible, but only if I'm not so miserable that I burden my kids. I spoke with my oncologist about my life priority, and he said he could try to make it happen by reducing the number of chemotherapy pills I have to take every day. He thinks it'll still work against the cancer and give me more time while reducing the side effects I can't tolerate."
- "I want to stay home and die in my home, but I want to be comfortable doing it. I don't want to feel like I have to struggle just to take a breath. My doctor recommended hospice support (read Post 27: When to Consider Hospice Support - Example #3) to keep me at home, and hospice will calm my breathing whenever it flares. I won't have to go to the hospital again. Best decision ever."
The problem is that many times both patients and healthcare providers either do not know how to or are unable to realize when to pause, step back, and re-evaluate to determine if the current treatment path is actually leading the patient to where the patient wants to go. Patients get stuck on a revolving door of medical treatments, which sometimes unfortunately lead them farther away from what they would consider a "good enough" quality of life.
As a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I once met with an elderly lady - we can call her Maria - who had both stage 4 lung cancer receiving cancer therapy and end stage kidney failure undergoing dialysis three times per week. She was so fatigued that she kept falling asleep in her wheelchair. Her daughter was adamant about finding as many cancer treatments as possible for her mother. "Mother may have to pause chemotherapy for now because of her weakened condition, but perhaps she can get more radiation. We just found out she has a couple new spots in her lungs, and I really want her to get whatever treatment she needs to shrink them."
I gently responded, "I just heard from you and your family that the one thing your mother wants most is to feel stronger. Right now, I think the best chance of her regaining some strength is to give her body time to recover from cancer therapies, especially since they seem to cause big side effects in your mother."
"Well...how about other treatments? Do you know of any alternative treatments we can try to shrink her new lung nodules? Because my mother is a fighter. She told me just this morning that she wants to fight."
I looked at Maria's daughter and Maria's quiet son seated across the clinic room. "Many times, the reason for agreeing to a medical treatment, like chemotherapy, is in line with what we want most, like slowing down the cancer with chemotherapy so that we can have more time with family. Sometimes, there comes a point when what the medical treatment is doing to our body is not at all in line with what we really want big picture-wise. In your mother's case, cancer therapies that once upon a time gave you and your mother hope that they would shrink cancer, make her stronger, and give her more months with family are now making her weaker, sleep 20 hours a day, interact less with her family, and likely not extending her prognosis since she is eating and moving less and less (read Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3, and Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3). Even if her cancer were shrinking, this life does not sound like the life she was envisioning and fighting for when she first started chemotherapy. Do you think when your mother says she wants to fight, she is talking not about making her CT scans look good but rather about fighting for more meaningful time with her family in the time she has remaining? "
"Yes!" the son jumped in. "I think that's exactly what she wants. And here on out, we need to look at the big picture every time we help her make decisions."
Maria's children were such strong advocates for their mother to receive high-value medical care. They realized that focusing discussions on goals of treatment had led to their aggressively seeking out and chasing more and more treatment options, sometimes at the expense of their mother's overall well-being. Focusing discussions on the goals of care - that is, their mother's current priorities, values, and definition of quality of life - made them realize that they actually had guidance on which treatment paths to pursue and which treatment paths to let go (read Post 8: I want the Best Care Possible for ME - Part 2 of 2).