Are you the designated family member responsible for communicating with your loved one's healthcare providers [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)]?
One day, these healthcare providers may relay life altering or devastating news about your loved one's medical condition. "How am I going to talk to Mom about this?" "How much do I tell her (read Post 34: Should We Tell Mom About Her Diagnosis? - Two Things to Consider)?"
One day, your loved one may decide they want to know more details about their medical disease, illness, or prognosis. "You want to know what the doctors said about how long you have to live?"
Many times a patient has told me, "I feel like there is more going on with my body than what I'm being told. I feel like people are keeping things from me." They have trouble finding openings to bring up difficult topics, and when they do, they get comments brushing off their real concerns. "You're doing okay. Don't worry about it." "Why are you thinking about this? Stay positive."
It is normal for family members to feel uncomfortable, awkward, sad, grief, even anger about a situation, which can make discussing serious news even more difficult. Dread and uncertainty can result in a family member completely avoiding a very necessary, and sometimes even desired, conversation.
Palliative care specialists follow several models to discuss serious news with patients and family (read Post 1: What Exactly Does a Palliative Care Specialist Do?), one of which is the SPIKES model. SPIKES is a six step guide that could potentially be used in any area of life when bad news has to be delivered, not just in the medical setting. I hope knowing that you can prepare for a difficult conversation and that you can take the conversation one step at a time will help relieve any sense of dread and uncertainty. I hope it will result in a meaningful conversation.
The steps in SPIKES are meant to be followed in order, though some steps may be skipped and other steps may require a longer time to complete.
Step 1. SETTING "Set the scene."
This involves physical, mental, and emotional preparation for the family member preparing to deliver bad news. Make sure there is privacy and quiet in the physical setting. Make sure adequate time is reserved without expectation of interruptions. This is not a conversation to squeeze in between cleaning up after dinner and getting the kids to bed. Mentally rehearse wording and phrases ahead of time.
"Mom, let's sit down tomorrow morning and go over what the doctor. The kids will be at school, and I won't be working then."
Step 2. PERCEPTION "Start with what the person knows."
Bad news is any information that is unpleasant or undesirable. "I'm sorry. We ran out of this shipment of the COVID vaccine." The really bad news seriously affects a person's view of their future. "I'm sorry. We had to intubate your husband this morning."
The impact of bad news is determined largely by a person's expectations or understanding of a situation. A person who does not have chronic medical issues and who regularly exercises may feel more devastated by a diagnosis of diabetes mellitus than the person who already takes medications for high blood pressure and high cholesterol and is fairly sedentary.
To get a sense of where a loved one is starting, use open ended questions to determine how your loved one currently views their health and medical situation. Based on this information, the family member can later correct misinformation and determine how to tailor the bad news.
Ask your loved one open ended questions about their expectations and hopes. This is the time to listen and keep the mouth closed for as long as possible, not jumping into immediate efforts to reassure or correct.
"I think I'm dying. I don't bring it up because I don't think the family wants to talk about it..." will likely set a different tone from "I'm going to live to see the oldest graduate from college four years from now."
Knowing a person's hopes and expectations could completely alter the plan moving forward. A young father might be willing to endure side effects of cancer therapy in an attempt to buy more years with his children. An elderly great grandfather might prefer to maximize time and energy at home with family, without experiencing the burdens or side effects of cancer therapy.
"Mom, what do you think is going on?" "What exactly are you wanting to know more about?" "Can I ask why you're wondering about this now?" "What are you worried about? What are you hoping for?"
Step 3 Invitation "Get consent to discuss details."
Ask "How much do you want to know right now? Do you want to hear all information, both good and worrisome, or would you rather just discuss plans for moving on? Do you want to know all the details, good and bad, to plan ahead, or do you want to know just enough to take it one day at a time?"
A person may want to learn best case and worst case scenarios that the healthcare providers have mentioned. They may be interested in what to prepare for in the future, but not explicitly discuss prognostic ranges that their family member may have learned from their physicians. "I think the doctors want us to focus on enjoying your birthday this year, so we'll move up the big family reunion we were going to have next year to this year."
"The doctor did say some things that are worrisome, some things that I'm worried will get your mood down. Do you want to know what to expect for the next few months so you know where to focus your energy? Or do you really want to know what the doctor said about how much time you might have?"
Step 4 KNOWLEDGE "Deliver and discuss the serious news."
Start with a warning "The doctors said unfortunately..." or “I wish this weren’t the case…” Speak with straightforward phrases and simple terms, which can sometimes be emotionally more difficult than parroting foreign medical terminology.
You can potentially hide behind "The doctors say you have a malignancy and it is metastatic," but you cannot hide behind "You have cancer and it's spread to other parts of the body." This is when some practice saying the words ahead of time might be helpful.
It is important to speak in simple, straightforward terms so your loved one does not feel embarrassment about not understanding the words nor hesitancy about asking for more information.
Give information in small chunks and keep asking if your loved one understands, tailoring the rate of delivered information to their ability to process that information. Some information may need to be repeated, during that conversation or in subsequent conversations, for a person to truly hear and process difficult news.
"The doctor said based on the results of the memory and problem solving test; the things the family have noticed are different this year - like that time you got lost on your way back from the store and the times we've found the faucet and the stove left on; your labs; and the brain scan that it looks like it's more than just old age. The doctor said it's dementia." PAUSE. "Apparently people with mild dementia can live for years with the dementia staying mild."
Step 5 EMOTIONS "Explore emotions with empathy."
This may be both the longest and most intense part of the conversation. Immediate emotions upon hearing bad news may include grief, anger, panic, fear, disbelief, denial, disappointment, sadness, hopelessness, shock, or isolation, all of which are human and "normal."
Strong emotions will affect a person's ability to process new information, look at the big picture, or make major decisions. The conversation cannot move forward to the next step until strong emotions have been acknowledged.
Acknowledging emotions and demonstrating empathy is so critical that palliative care specialists generally follow a five step guide, labeled with its own acronym NURSE, that can be used in any emotionally laden conversation, not just with discussing difficult news about health.
1. Name the emotion without telling your loved one what they are feeling (i.e. not saying, "you seem angry").
"This would be overwhelming to many people."
"Many people hearing this would feel scared."
If your loved one is silent, ask, "Can I ask what you're feeling right now?"
2. Understand the emotion. Try to identify the reason for or source of the emotion. After actively listening to your loved one express their emotions, paraphrase what you hear to let them know that you are trying to understand why or how they feel that way.
"I hear that you're angry because you've worked so hard to turn your life around. You gave up bread to better manage your diabetes. You quit smoking. And you still had the stroke."
3. Respect the emotions and your loved one's struggles. Validate the emotion because really, all emotions fall within the realm of "expected as a human being who has just heard something life altering."
"I imagine many people would respond this way."
Sincerely praise your loved one for their strength, resilience, grace, advocacy, patience, hard work, or any other quality of strength.
"You have done an amazing job staying on top of this, always asking questions to your doctors and taking the time to learn your medications."
4. Support your loved one with empathic responses.
"I wanted to hear something different from the doctors too."
"This truly sucks."
5. Explore the emotion. This step is tied to step 2. Explore the emotion, especially if your loved one wants to talk further.
"I feel angry too. You were driving around and carving the Thanksgiving turkey two months ago, and now it's hard for you to stand up. It doesn't make sense."
Until strong emotions have calmed, the conversation cannot move on to the next step in SPIKES. A person overwhelmed with strong emotion will have difficulty hearing about next steps and making decisions to move forward.
"I didn't want to believe it, either. Dementia sounds scary. I remember how we used to take care of Grandma. You said you didn't want to linger like her, not being able to think for yourself."
Step 6 STRATEGY and SUMMARY "Plan the next steps."
Your loved one is as much in charge of the decision making as they want to be. Encourage their participation, which may involve asking them to paraphrase back the situation and the plan.
A person with a clear plan for the future is less likely to feel anxious or uncertain.
"Dad, let’s focus on being able to walk again with physical therapy. You work on your rehab and your nutrition. When you return home, we'll all go on a diet to help keep your blood sugar and blood pressure under control. Mom is taking over your medications. We're going to try really hard for you to not get another stroke."
"Mom, we're going to hope the dementia stays mild for a long time. Regardless, I'll still go with you to the doctor, and I'll always ask you what you want. You're going to stay the boss. We'll take it one day at a time, and if there ever comes a day when you don't understand what's going on, I'll follow your wishes so you'll still be the boss."
Maintain hope, which is the belief that a person can find a way forward, regardless of the situation, and that they will be supported at every step. One may still be able to prioritize how they want to spend their limited time (read Post 7: I Want the Best Care Possible for ME - Part 1 of 2); maximize time with people they love and do things they enjoy; work on a legacy project (read Post 12: Legacy Work and the Five Senses); express words of love, gratitude, or forgiveness not often said; complete a medical power of attorney [read Post 4: Eleven Common Myths About the Medical Power of Attorney (MPOA)], and/or discuss resuscitation wishes in a deliberate, non hurried manner (read Post 5: CPR on TV versus CPR in Real Life - Three Ways They Differ).
Whereas optimism may be saying, "Your end stage cancer will be cured with this drug. Just think positive thoughts, and don't think about the what if's," maintaining hope could be saying, "Whatever happens with this end stage cancer, you can still set goals that you can work towards. You won't have to go through this alone. No matter what happens and how you feel, I won't abandon you and I will support you the best way I can."
(Read Post 65: Optimism and Hope.)