Post 78 - "If You Really Loved Me, You Wouldn't Leave Me" and Other Things We Say When We're Hurting
Updated: Oct 24
I hear doctors comment that their colleagues feel like they have failed in the face of impending death of one of their patients (though I have not really heard a doctor admit this for themself). To avoid dealing with this feeling of failure, some doctors may distance themselves from their patient (with reduced call backs, brief call back messages informing their patient that they should speak with another doctor or specialist, or reduced in-person visits). Others may refuse to acknowledge the trajectory of the patient they see before them and continue medical treatments as if their patient is walking and talking even when their patient is no longer eating nor moving much out of bed.
So too, as a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?), I have witnessed a variety of responses when patients and family members start to realize death may be nearing. I have seen patients and the people they love, trust, and want at their bedside when almost everything else has been lost at very different (emotional) places when it looks like the patient "isn't doing well." And in some of these situations, I too have felt helpless.
You can prescribe a pill for physical pain, but no pill is going to take away emotional or spiritual pain. Perhaps I might get lucky with a phrase of words that resonates with someone at that exact moment, just enough to momentarily lessen their emotional or spiritual distress (read Post 46 - How Being a "Fighter" Can Alter Your Path).
Sometimes a patient is angry - really, really angry - with their situation and unable to find any peace, meaning, new purpose, or acceptance with a dramatically changed personal future. They might say, "I feel like my prayers hit the ceiling and bounce back to the ground. There is no point to us meeting or me having visitors, staring at me like I have something pithy to say." Their family members may waver between being supportive the best they can be and asking for anything that might lay rest their loved one's anger. "She's so agitated and upset. Can you give something for this, like an ativan?"
Sometimes a patient is fearful - whether it be of the unknown of dying, potential pain or suffering with dying, physical or emotional abandonment, the process of dying, the thought of no longer being in existence, or the afterlife - and they repeatedly ask for more, more medical treatment or longer hospital level of care. They might say, "Do everything you can to keep me alive, even if you have to use machines. I don't want to die." Or a patient sees their body's weakening as a sign of personal failure, and they may also ask for more, more medical treatment or longer hospital level of care, saying "I am a fighter! I am a fighter! I have a neighbor who beat cancer. I can too!" Their family members may waver between being supportive the best they can be and establishing personal boundaries when they become exhausted of, and possibly numbed to, constant news that their loved one's body is not doing well with yet another attempted medical treatment. "He's in denial. He's dying. You see it, I see it. But how can we help him if he's in denial?"
Sometimes a patient expresses tranquility and acceptance with the inevitable and asks only to be allowed peace and rest. They might say, "I've lived a good life. Whenever it's my time, I'm ready. I'm not afraid of dying." Their family members may waver between being supportive the best they can be and expressing their frustrations over their loved one's acceptance of letting go. This may be especially true if they are unable to reconcile their loved one from before - active, strong, healthy, hearty - with their loved one they see before them, dependent on others to use the bathroom or even just to lift the spoon up to the mouth. "He's being lazy. He was fishing a year and half ago. He made it through surgeries and chemotherapy last year. It's like he just stopped trying. It's really frustrating."
Sometimes a patient expresses peace and acceptance with the inevitable, and their family members do not. They may waver between being supportive the best they can be and expressing their fear of losing their loved one in outbursts of anger, whether it be towards healthcare providers or towards their loved one. They might say to their loved one, "If you really loved me, you would fight harder to stay with me."
In these moments, there is not much an outsider stepping into their lives for an hour or two can do. As a palliative care specialist, the best I may be able to do is sit, stay present, and allow these emotions to be expressed, sometimes asking questions that open the door to honest conversation among loved ones.
It is one thing if people are not on the same page because they have heard varying medical updates from healthcare providers. This disconnect could be improved with a family meeting (read Post 53: 9 Steps to Holding a Family Meeting When a Loved One is in the Hospital and Post 55: Family Meetings Can Go Sideways Fast - 3 Tips to Getting Back on Track).
However, if everyone has heard the same medical updates, it may take internal work on the part of all loved ones (rather than an outsider weighing in) to preserve relationships during an emotionally fraught time. Consider the following suggestions:
1. Ask yourself why you feel so strongly the way you do. The first step is being aware that strain in family dynamics may be due to these strong opposing thoughts and emotions about one's (or a loved one's) severe health decline. You will likely not be able to convince someone else to change their feelings, and they will likely not be able to change how you feel. Acknowledge that everyone has the right to feel how they feel, even if their emotions are very different from yours. Then examine why you yourself feel the way you do.
2. Realize that even the people closest to you may react to a life altering situation, such as a shortened life expectancy, in ways you may never have expected. We are different people with different perspectives and different levels of emotional awareness at 40 years of age than 20 years of age because of the multitude of life's events and changes that we experience - being fired from your first job, saving to buy a house, making daily compromises while living with a serious partner, becoming a parent. It would be hard for any of us to imagine how we may react to the realization that we are dying or that our loved one is dying, that we may have months together rather than decades. It is possible that we may never really understand our loved one who is living while dying.
3. If possible, empathize. At the very least, respect. Acknowledge that everyone in the family is coping the best they can in an overwhelming situation and that how each person copes or reacts to a situation may be affected by their individual past experiences. Respect your loved one's emotions and way of coping, even if you do not agree (of course, if their way of coping has the potential to cause harm, such as abusing prescription or non-prescription drugs, then find help for them as soon as possible via their doctor, counselor, another family member, best friend, spiritual advisor, or even the national "988" Suicide and Crisis Lifeline or local emergency services if cause for harm is high). If possible, you could try to understand and "feel" the emotions of your loved one (that is, empathize), but many people understandably may not have the emotional bandwidth to do this.
4. Remind yourself that above all else you love each other and are trying to preserve this relationship. If your expected time together with your loved one (patient or family member) has unexpectedly shortened, remind yourself that you are trying to preserve the relationship for the time you have left together. This may mean trying to find common ground in other areas, such as reminiscing humorous or touching moments together, working on a legacy project together (read Post 12: Legacy Work and the Five Senses), distracting yourselves from the situation by watching movies together, coming up with a list of questions (about dying or anything else that is worrying your loved one) together to ask the doctor, or getting affairs in order together (read Post 66: Eeny, Meeny, Miney, Moe, Which Advance Directive Do I Show? and Post 50: What about the Hidden Costs? - 10 Potential Expenses of Living with Declining Health).
And this - reminding yourself that above all else you love each other - is likely the least in which someone outside the family such as a doctor can help, but possibly the most important for you to remember and actively practice.
(Read Post 18: Decisions Based on Love Can Be the Hardest to Support for examples of other situations in which speaking from the heart would also be more powerful than any medical intervention.)