Palliative Matters: Episode 1

What Is Most Important When We Can’t Have What We Really Want—a Cure

What do seriously ill patients and their families go through when confronted with difficult decisions about the patient’s medical treatment—especially when there are no clear best answers or obvious solutions? The illness may keep advancing despite all of medicine’s best efforts.

Hospice and palliative care specialists John Mulder, MD, executive director of the Trillium Institute, a palliative education and training center in Grand Rapids, Mich., and Jason Beckrow, DO, medical director for Caring Circle – Spectrum Health Lakeland, explored this question in a recent podcast conversation on Trillium’s podcast, Palliative Matters. As palliative doctors, they help patients and families who are dealing with the difficult circumstances of an advancing illness, which might not be curable, in order to make informed, values-based decisions about their care and treatment.

How can patients get clear on their values, their priorities, their hopes and their plans? How does the palliative care team help with these explorations? What kinds of outcomes can be hoped for when curing the disease has become less likely? These concerns are experienced by many patients who are confronting difficult circumstances posed by a serious or life-threatening illness.

But there are strategies that a palliative care team can offer. Dr. Mulder suggested a four-part “path” or series of questions that can help clarify what’s really going on, starting by asking what the doctors have told the patient and family about the condition, prospects and likely disease course. Next, what is the medical plan for trying to cure or otherwise manage this condition?

The third step recommended by Dr Mulder is to ask patients what is “sacred” or precious or most important for them at this time of their life? If they were not able to get better or were now facing a finite life expectancy, how would they want to spend the time that’s left to them? What would they most want to achieve in their remaining life, with the energy they are now able to devote to it? What would give their life meaning and fulfillment and how can they make that happen?

Finally, Dr. Mulder asks the patient: Are the things you are doing now under the current medical plan helping you to achieve what you say is important to you? Or are they standing in the way? If aggressive medical treatments such as chemotherapy sap patients’ strength or make them feel too sick to embrace what is most important in their life, with little hope of curing the disease, is that really the best path forward? Are medical treatments impeding the rest of their life.

Might there be other ways to emphasize what’s most important? Perhaps a different treatment approach might be better—even if it means acknowledging that the obvious goal of getting better, being cured, and returning to the normal life they had before they got sick is no longer likely to happen. But the patient is given a chance to say what’s important to them at this crossroads in their life… whether that is spending more time with old friends, going fishing again, or living long enough to attend an eagerly awaited wedding or christening or graduation of someone close to them.

The Role of Palliative Care

Palliative care teams typically are called in to help patients and families dealing with difficult—even dire—circumstances. They supplement, rather than replace, the medical team treating the patient’s disease. But their focus is on relieving the symptoms of illness, clarifying the patient’s values and goals for medical care, and offering a greater sense of control over the difficult circumstances of a serious illness and its treatment.

These difficult circumstances might include the illness’s relentless advance and may involve pain or other uncomfortable symptoms such as nausea, fatigue or loss of function. There are concerns about the future, which may be compounding anxiety or depression, and all of the complexities of coordinating the patient’s medical and personal care needs. Disease can take so much away from a person’s sense of mastery over their own life. And then there are questions about what lies ahead? Do they understand where they are at on their life’s journey What choices are actually possible at this point in the journey?

Maybe the referring doctor recognized that the patient has reached an impasse emotionally and needs help sorting out what they want, how their values could shape medical decision-making, and what they ultimately would choose as their path forward? Maybe doctors, family members, friends and others are all offering advice that points in different directions. There can also be an assumption that when patients are asked to make difficult decisions about their medical care, there is a conceivable “right” decision versus less right alternatives that might make their situation worse.

In reality, for people living with advancing illness, the palliative care team can help clarify that there might not be a “best” decision. The most efficacious treatments based on existing medical research likely were already offered and found not to be helpful, and second- or third-line treatments likely have less chance of success. Families should be helped to understand that the decisions they are asked to make are not going to be the deciding factor in whether their loved one lives or dies.

What Is Everything?

Not everyone facing similar circumstances will answer the big questions the same way. For those who say: I want to try everything, Doctor, it might be worth clarifying that this optimally means “everything that is likely to be beneficial.” Others might say: There’s no way I am going through another round of that chemotherapy, even if it’s my last hope. How can the palliative care team support both values-based approaches?

Palliative care experts emphasize that it is worth taking the trouble to clarify the patient’s goals and values, hopes and wishes, preferences for medical care and their life circumstances—in light of the disease and all that it forces on them. We shouldn’t assume that they want every possible curative treatment. In effect, the palliative care clinician is asking: What’s most important to you—and how can I help you make the informed decisions that will be most helpful in achieving it?

This is done through building a relationship with the patient and family, demonstrating the clinician’s commitment to listening to what’s important to them, and growing a level of trust that the clinician has their best interests at heart and will be there to support them, whatever comes up.

Patients who are helped in clarifying these questions and finding answers that make sense for them on their journey may experience a surprising sense of relief from all of the challenges, ambiguities and difficult choices the disease has imposed. At least they know what is expected to happen to them and they have a realistic plan for how they are going to face it.