PracticeUpdate: How do you talk with patients about end of life, and how do you help them plan for a peaceful death?
Lillie Shockney: I ask the patient how she defines her quality of life. What are the joys that she has or had that we now need to be restoring or preserving for her?
I always, always, always ask, "What are you hoping for right now? What are you most worried about right now? And tell me three things that bring you joy or joys that you've recently lost that we need to figure out how we can restore for you?" And those joys are going to change over time. Those hopes, those worries, are going to change.
So, I spoke before about the phases of hope. Hoping for a miracle at first, living out a long life with a good quality of life, living in harmony with a disease, realizing you're definitely going to have a shorter life, that we want to preserve quality of life. And then, finally, orchestrating a good and peaceful death. There are very specific elements that we need to make the patient aware of and need to help her achieve, and these can't be done in 5 days. We still have the problem of hospice being offered way too late; 5 days of hospice, I think, is the average, which is terrible; it's designed for 6 months.
In any case, the first step toward a good and peaceful death is knowing your purpose for living, and that your life was valued by at least one other person.
Next is leaving a legacy, unrelated to leaving money. You don’t have to be wealthy or have your name on a building to leave a legacy. A legacy could be a philosophy that you have. One of my patients asked me to serve as her voice for her philosophy, and I do all the time. She said, "Those of us with advanced disease, we have choice; we could choose to be living each day with our cancer or dying each day with our cancer. And I hope people will do as I've done, that they will choose to live each day."
Third is giving forgiveness and receiving forgiveness, which doesn't mean you forgive everybody who you feel has done you wrong, but you need to think about it. And you need to let them know that, yes, you've forgiven them or, no, you haven't and why. And then you may want to ask somebody to forgive you for something. It's really a very important part of closure.
Being pain free. And that doesn't mean being on opioids and sleeping around the clock. Palliative care experts, who I consider quality-of-life coaches, are very talented at being able to use remedies other than opioids to get pain gone. It might be a nerve block, for example.
Dying with dignity in the environment of your own choosing. We only ask 24% of patients where they want to die. More than 90% of those who we do ask say at home with hospice; but we're only asking 24%. Some 23% of patients with advanced cancers die in an ICU on a ventilator because there was no discussion at all. That's a terrible way to go. It's a terrible way for a family to witness their loved one dying. It's inexcusable to me.
Having all legal and financial affairs in order. You need a lawyer, you need a financial accountant. This requires planning and thought. People may say, "Well, I really don't have anything that I'm leaving."Yes, you do. I don't care who you are, you do, and you have the right to decide who's going to have that, if it's an object, for example. And hopefully, that will give you some joy in knowing that your daughter is going to have, I don't know, your bracelet. That it brings you joy knowing that she's going to have that and then pass it on to her daughter.
Leaving no financial debt for the family to pay. This is important to patients. They don’t want their family dealing with large bills that will impact their family’s financial wellbeing later. This is one of the reasons that ASCO, many years ago, recommended, when we are discussing risks and benefits of each treatment with a patient, that cost also be incorporated into that discussion. It isn’t realistic to expect that an oncologist will know the financial answers, however. There should be financial counselors or financial navigators who can find out this information for the patient and the doctor. This way, patients can make a determination based on all three elements—risks, benefits, and cost—if they want to do the next treatment that is being recommended and discussed. And the patient doesn’t want her adult children saying, “Don’t worry about it, Mom. We’ll cover whatever expenses may be come up with your ongoing treatment.” The patient doesn’t want that to happen. And, commonly, family members are clueless about just how big of a bill this next treatment may cost out of pocket.
Feeling spiritually connected to a higher power, which some patients, embrace early on, and others might not to the end hour. I always feel better when I'm able to validate that that's happened.
And then the last, which to me is one of the most interesting ones, is feeling confident that you will be spoken of fondly after you're gone. You would be surprised how important this is to patients. They know right now that people are saying wonderful and kind things about them, even to their face. But how a person really feels about you is what is expressed after you are no longer on this earth. Patients even wonder what someone might be thinking when they walk up to the casket and see them laying in it. So, what people say to others about them as well as what the individual thinks silently about them is important to patients.