You may think the end of life is a time for grandiose moments, but the things that make us love life are often very small.
It’s time to think about this new reality and figure out what your priorities are now. That said, it’s rare that a treatment decision actually has to be made right away. More often, you’ll have time to mull things over. Take it. Look inside and around yourself. Think about where you are, where you’d like to go, and what you’ll need to get there.
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I OFTEN SEE PEOPLE IN this moment wanting to hand themselves over to a doctor who they think knows more than they do. The desperation is understandable, but be careful to not give yourself away too easily. Even if you want the doctor to make decisions for you, that doctor needs to understand what is most important to you so that she can tailor treatments and treat you with respect.
When first meeting a patient and their circle, I’ve learned to ask a range of questions that help me see past the disease and understand the patient as a person; questions that get at their history, their beliefs; what makes them tick and what makes them bristle. Only with a more intimate understanding are we able to support patients in ways that will actually help.
Consider the following questions to get a sense of yourself now. This is the first step on the way to arriving at a personalized plan for how to proceed. These questions are best answered in dialogue and at multiple junctures over time. Use them as conversation starters with your family and your doctor:
1. What have I been doing with myself?
When we’re stressed, we tend to revert to base, familiar territory. Pay attention to how you’re coping now, and consider how you’ve coped with difficult things in the past; you are looking for clues on how you might want to move forward this time. Keep an eye out for both the positive (constructive) and the negative (destructive). Have you been drinking a lot? Getting happily engrossed at work? Knowing this will help your doctor determine the parts of your routine that should be nurtured and protected and what should be dialed down.
2. What do I find myself thinking about most?
Often the worries that surface tip you off to what needs attention. Maybe you can’t stop thinking about what will happen to your spouse’s health after you’re gone, or how you’re going to get the kids to school on chemo days. A good next step might be to get your partner a physical, or work on the carpool schedule. Or maybe you keep thinking about visiting someone or someplace, so you might make that trip a priority. Whatever it is, your mind is trying to tell you something. Start somewhere. The idea here is to ease your burden wherever possible to free up time and space.
3. When and where during my day do I feel the best? When and where do I feel the worst?
What are your daily patterns? What people, places, activities, and things might you avoid, and which might you seek?
4. How has my mood been?
If you’re angry, where is the anger directed? If you’re sad, how are you handling it? If you’re strangely giddy, you either have everything in perspective, or you may be in denial. Your mood offers you and your loved ones cues about what needs attention and how to respond. Asking yourself this question is an invitation to let it out.
5. What am I most proud of? What do I like about myself?
What are your strengths or interests? Identifying those will help you make decisions absent fear or nihilism. Look for aspirations: Who do I want to become? Is there a trait or a habit I’d like to change? There is always room for growth.
6. Have I ever lost someone close to me?
If the answer is yes, thinking about how they made their way to death may help you consider your own choices. Do you have old grief or fears from that experience? The past will color your choices, so take a moment to sift through whatever thoughts and feelings bubble up. If the answer is no, then you might expect to have more questions for your doctor, or to not know what to ask in the first place. It’s a good idea to make that confusion clear.
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WHAT STAGE IS YOUR DIAGNOSIS, and what exactly does a “stage” mean anyway? And how about the rest of your life: Where do things stand with your overall health, home life, finances, and social life? When it comes to treatments, what are the options? This is a time for reflecting out loud with people close to you; with all the consequential decisions to be made, it’s all the more important that you’re on the same page with your circle, including your clinical team.
1. What do I understand about my diagnosis? What do I know about treatment options?
This is generally one of the first questions any trained palliative care clinician asks when meeting a patient. Asking and answering this question is a great way for you and your doctor to get aligned.
Pain, nausea, trouble sleeping, constipation? Feeling “off” in some way? If so, these are important calls to action for your clinicians. If you’re feeling lousy it’s very difficult to make the best decisions for yourself. To whatever degree possible, getting on top of your symptoms should be an early priority.
3. Have I been able to talk to anyone about this, and if so, how did that person respond?
What’s your social situation? Do you have people you can turn to? How much help do you have around you, and how willing are you to reach out and use it?
4. Do I feel I can talk openly with my doctor?
If you can’t trust your doctor, it’s time to either work on that relationship or find a new one. You may have to hit the yellow pages to find a new physician or ask friends whom they recommend; or ask the clinic staff if there are other physicians in the practice you might switch to. The doctor-patient partnership is a critical one, and your previous doctor should only be supportive of you finding the best fit.
5. Where am I living?
Are your bare necessities covered? Do you have a roof over your head, and can you rely on that roof for the foreseeable future? Is your home easily accessible to emergency care and others coming to you? To whatever degree possible you’ll want to feel safe and secure, and you’ll want to have access to care and support.
6. What are my assets? What insurance do I have?
What do you have to work with? Check your assumptions about the costs of care. Being proactive and thinking about your finances early can avoid serious problems down the road. Whatever you have, start there.
Answering these questions will help you get a handle on your situation and where you want to make changes. And if you’re feeling as though you don’t know enough or have enough, try not to worry—everyone feels that way, no matter what they have or know. It’s always about making the most of what you have.
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THIS ONE QUESTION SHOULD BE the central guiding force in your care plan. It might seem like an easy one at first, but it can be hard to answer, not unlike “Who are you?” Here’s a list of questions that will inform your answer:
1. Which of these is my first priority: amount of time left, or quality of time left?
2. How much time do I want to spend with family and friends?
3. How much faith do I have in the health care system? In my doctor?
4. Do I have dependents, and what do they need from me?
5. What are the financial costs of possible treatments versus no treatment?
6. Where do I want to be when I die?
7. What are my opinions regarding life-support measures?
8. Do I want to make health care decisions, such as treatment choices and whether or not I want life support, or do I want others to make them on my behalf?
9. What does my faith or belief system dictate, and how important is that to me?
10. What type of funeral or memorial do I want?
11. How do I want my remains handled?
It’s possible that what’s important to you now has nothing to do with treatment. A hospice nurse told me a story about how her father, a lifelong academic, just wanted to stay at home and be comfortable enough to watch Red Sox games. She was surprised about this choice given how complicated and cerebral he ordinarily was. It brought her such relief to know her father was getting what he actually wanted. Keep in mind that your treatment decisions will affect everything on your list above because of the demands on your time the treatments invariably make.
I had two conversations about goals of care with Randy, a 27-year-old with metastatic mesothelioma. He was young and otherwise healthy, so we worked on his fatigue and pain regimen and then talked each other into gearing up for a long treatment course. Randy received an initial dose of chemotherapy just a few days after his first dose of brain radiation—the first attempts to outmaneuver his cancer. Even though his cancer was terminal at the time it was discovered, there was just enough of a chance that these treatments could slow the disease, push it back. That was his first goal. And it wasn’t hard for everyone to adopt an aggressive stance, no matter what the chances.
A few days later, Randy was back in the hospital, utterly exhausted. Just the one dose had leveled him. Coming to terms with that reality and looking for a new way forward, I asked Randy what gave him pride. At your best—your favorite—who are you, Randy? He answered that he wanted everyone to know how much he loved them. He wanted his death to prove his love of life. Now we had a compass by which to make treatment decisions.
Randy decided to forgo more chemo or any other intensive intervention. He signed up for hospice and moved from his cramped apartment to a hospice house. There he was surrounded by family and friends and was comfortable enough to feel and show his love—to soak it all up—in his final days.
You may think the end of life is a time for grandiose moments, but the things that make us love life are often very small.
Here’s a simple exercise that can help you get a bird’s-eye view of your care goals:
1. Draw three lines down the center of a piece of paper.
2. At the top of the first column write: MY SITUATION.
Elaborate on your understanding of your condition and of the resources available to you.
3. At the top of the second write MY GOALS.
Write what you want to do (this can be anything)—live as long as possible, die comfortably at home, travel, reconcile with loved ones.
4. At the top of the third write TRADE-OFFS.
What are the trade-offs you are willing to make and not willing to make? For example, are you willing to have a surgery that would take away your ability to swallow food if it extended your life? And does it change your thinking if that trade-off comes with a feeding tube? Or how about treatments that require you be in a hospital instead of home for much of your remaining time?
5. At the top of the fourth write NEXT STEPS.
What’s next for you? A trip? Treatment? Making home safe to stay put? Electing hospice?
MY SITUATION |
MY GOALS |
TRADE-OFFS |
NEXT STEPS |
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IT’S A GOOD IDEA TO reexamine what’s important to you ANYTIME you find yourself at a crossroads, or whenever something significant has changed, such as:
• You need to decide whether to pursue a particular treatment
• Your disease has progressed or shifted and you’ve been told your illness is at a new stage
• The details of your life have changed. You have lost or are changing homes; have become newly insured or uninsured; have had a child
• Your ability to care for yourself has changed. You’ve become dependent on others for basic acts like grooming or hygiene or getting out of bed; or others in the home have become dependent on you because they’re sick or disabled
• Your perspective has shifted in a significant way. Religion has entered or left your life; or you’ve had an epiphany about what really matters to you in the end 