My Top Story of 2020 is a European retrospective study of the use of chemotherapy during the last month of life of patients with metastatic breast cancer.1 Among the Greek cohort, 46.5% of patients received chemotherapy within a month of their death. Among the Swedish cohort, 23.2% received it, with higher rates among women aged 60 years or older.
Studies conducted in the United States have measured the same thing.2 As high as a rate as 80% of patients with some form of advanced cancer received therapy at the end of life, with some receiving it literally during their last week of life.
What is unfortunately missing is information about the patients’ quality of life during the final month of life, whether they actively participated in the decision-making to continue their chemotherapy, and whether they even had time to get closure with themselves and their family as death drew near.
There have been studies, however, that use quality of life as a key measure to determine what is the right thing to do for the patient. Use of quality-of-life information as a tool to aide decision-making in routine clinical practice is rare; however, it should become common practice, and the sooner the better. The Schedule of Evaluation for Individual Quality of Life Direct Weighting (SEIQoL DW) is a tool that captures the multidimensionality and uniqueness of the individual, allowing cancer patients to define areas of importance to their quality of life and to demonstrate how it ranked in importance to them. In one study, it was hypothesized that routine measurement of patients’ quality-of-life with a graphical presentation of their results informed their clinicians, thus serving as an excellent communication tool for clinicians and patients to determine how best to improve quality-of-life outcomes.2
One study, which included a randomized controlled trial of 65 patients receiving chemotherapy for advanced cancer was conducted to measure differences in perception of quality of life over four time points between the intervention group, whose quality of life measures were reported to the clinical team, and the control group, whose quality-of-life information was not. The primary objective was to compare quality-of-life outcomes and examine the differences between the groups.
The results demonstrated improvement in quality of life of all patients from baseline to the fourth time point. The top four cues chosen by patients as important to their quality of life were health (92%), social activity (64%), keeping active (58%), and family support (43%). Closer analysis of these individual cues showed interesting differences between the intervention and the control groups. Participants in the intervention group demonstrated a 51% improvement in perception of health functioning compared with a 19% improvement in the control group.3
The National Quality Forum (NQF) has developed measures that are deemed inappropriate medical practice if they were to occur. NQF 210 is such a measure and is defined as the proportion of patients who died from cancer receiving chemotherapy in the last 14 days of life.4
Such measures stress that we need focus far more on quality of life and not quantity of life.
Research conducted at Dana-Farber and Harvard demonstrated that “Overall, the team found that terminal cancer patients who receive chemotherapy during the last months of their lives are less likely to die where they wish and are more likely to undergo invasive medical procedures—including CPR and mechanical ventilation—than patients who did not receive the therapy.”5
So why are we failing our patients in this way? It is likely due to how oncologists are trained to treat the disease, rather than treating the patient. As long as there is another treatment to give the patient, then another line of therapy will be discussed and planned for. Patients may be hesitant to tell their doctors that they want to stop treatment because they worry about making the doctor mad at them or the patients fear that the doctor won’t feel appreciated for trying to save their lives. Saving life was never the goal, however. Control of the cancer while preserving quality of life is the real goal and the right goal.
More medical training is needed in the field of effective communication, especially when it comes to giving bad news. From the beginning there needs to be an agreement between the patient and her oncologist on what the goals of care are, what to expect from treatment when it becomes palliative and no longer adjuvant therapy. Preservation of important milestones to the patient coming up in the near future need to be dovetailed with the treatments that the patient does receive (such as not starting a new therapy that has known side effects of nausea, vomiting and diarrhea just a few days before her daughter’s wedding).
Patients need to be navigated through the phases of hope so that we can prepare them each step of the way for what will be happening next.
The phases of hope we need to navigate our patients through begin with hoping for a miracle, and they have the right to hope for a miracle. We can remain hoping with them for about a month. Then the next phase of hope is to hope for a normal length of life, filled with quality of life and an ability to live in harmony with this disease. As the patient begins to blow through more chemotherapy treatments, however, that are more toxic and working less effectively, it is time for a discussion about planning on a shorter length of life, with the hope of still maintaining a reasonably good quality of life. Then finally, we should help the patient experience a good and peaceful death.6
Planning for a good and peaceful death cannot be accomplished in a few days or even a few weeks. It requires a lot of thought and several months of time to orchestrate it. Having a patient receive chemotherapy during her last month on this earth will not be conducive to her experiencing a good death. It also implies that the doctor is still “trying to save her life” when such thoughts should have ended a long time ago when goals of care were discussed and agreed upon.
These are the elements needed for a patient to experience a good and peaceful death:
Knowing her purpose for living and that her life was valued by at least one other person
Leaving a legacy, unrelated to leaving money for something (it could be a philosophy about living a good and productive life, for example)
Giving forgiveness and receiving forgiveness (which doesn’t mean the patient needs to forgive everyone who she feels has wronged her, but it does require giving serious thought to it and making such a decision. And for those from whom forgiveness is sought, it requires a conversation with the person who is on the other side of this equation.)
Being pain free (this requires effective palliative care, without the use of high-dose opioids or the patient may sleep through the last month of her life.)
Dying with dignity in the environment of her own choosing. Only 24% of patients with advanced cancer are asked where they want to live out the remainder of their life, and, among those who are asked, the answer 91% of the time is “home with hospice care.” However, 23% of patients who are not asked die in an ICU on a ventilator.
Feeling confident that she will be spoken of fondly after she has died
Having all legal and financial affairs in order (which takes the help of a lawyer and/or accountant to help the patient wrap things up the way she wants)
Leaving no financial debt associated with her cancer treatment. (We do this one poorly in the United States. Drugs are more expensive and co-pays and deductibles continue to escalate. The patient doesn’t want her family to be stuck with her medical bills.)
Feeling connected spiritually to a higher power
When we help a patient fulfill these elements, we have provided truly good quality of care.
Not too long ago, I was holding a metastatic breast cancer retreat (3 days and 2 nights in length), and a young woman came accompanied by her mother who was in a wheelchair and who had MS. When it was time to share her story, she made a comment that was significant and needed to be addressed ASAP. She said that she was now on her fifth line of therapy, which had made her very sick. Her doctor said he was going to now start her next treatment and she stopped him from talking to ask him a question: “This will be my sixth chemotherapy treatment. Is there 6 of 7 treatment options or perhaps 6 of 17 treatment options?” The doctor’s response to her was, “We don’t have to talk about that today.” She was hesitant to pursue it but wanted to and now was asking me the same question. I responded asking why she feels the need to know this soon. She said that she was a single mother, has a 3 year old, and her mother sitting there next to her has MS and soon will need assisted living, and she has not yet chosen someone to adopt her daughter. I told her that her doctor didn’t want to talk about it because he wasn’t ready emotionally to discuss it but that she definitely needs to know and to know now because, in my opinion, her time was drawing short (metastatic disease to the bones, lungs, and liver; walking very slowly; sleeping at least 6 hours during the day). I told her to call her doctor on Monday and tell him why she must know the answer. She did and then called me saying, “He told me this is it. This is my last treatment. Maybe a phase I trial would open but he doubted I would meet the criteria even if it did.” That story has stayed with me and will always. It is another example of a patient being put off from getting her affairs in order because the doctor isn’t comfortable talking about end-of-life planning. How very unfair.
If we have chosen as our medical career to take care of patients with metastatic breast cancer, we owe them honesty, supporting them through phases of hope until the end, with all the elements needed to experience a good death having been achieved, so we can say we know we did our best for them. Cure was never the goal. Quality of life is more important than anything. Giving chemotherapy during the last month of life is a sign that we are failing our patients.