By JUDD MATSUNAGA, Esq.
“In this world, nothing can be said to be certain, except death and taxes.” (Ben Franklin)
Singer/songwriter Steve Earle elaborated, “They say death and taxes are the only things that are inevitable. The truth is you can not pay your taxes. I have done it and there’s consequences, but it can be done. Death you’re not going to get out of, and you kind of got to deal with it.”
The problem is, we as a society, don’t “deal with it (death)” very well. When a loved one becomes fatally ill, family members are emotionally unprepared on how to have delicate conversations about a person’s end-of-life desires. People don’t know what to say, get stuck, and sometimes avoid the topic altogether.
Clearly, talking about death and the end of life remains taboo around the world.
As a result, “Over-treatment and unresolved existential issues is what causes suffering at the end of life,” says palliative care expert Rebecca Gagne-Henderson. Research shows that as many as 33% of seriously ill, hospitalized seniors are receiving invasive treatments they don’t want because no one has talked to them about their wishes for future care. (Source: www.theepochtimes.com, “To Die Well, We Must Talk About Death Before the End of Life,” Feb. 17, 2020)
Open discussions can reduce over-treatment and distressing re-admissions to the hospital for patients whose condition won’t improve. They also increase hospice admissions and earlier referrals to palliative care services — which, studies show, helps patients with serious illnesses live better for longer, extending time with loved ones. In addition, open discussions give voice to deeply personal feelings and hopes that are often unrecognized until the talks begin.
We expect the doctors to ask us what kind of end-of-life care we want. However, according to research conducted by the John A. Hartford Foundation, less than a third of American doctors say they have had training on how to talk with patients and their families about end-of-life care, leaving half of them unsure of what to say. (Source: www.theepochtimes.com, “Talking About Death: The First Step to Dying Well,” Sept. 12, 2023)
Dr. Pamela Prince Pyle, a board-certified internal medicine physician, says, “As health care providers, we are trained to do everything in our power to battle disease and restore or maintain health. With our white coats and stethoscopes as “armor” and new pharmaceuticals and cutting-edge treatments as our weapons, we’re always ready to go to war. But sometimes we fight so hard that we lose sight of what we are fighting.”
If you’re like me, you have a quiet wish that you will die peacefully and with dignity, without any pain, and with loved ones by our side. But without talking about death, providers and family members may opt for more treatment out of fear of not doing enough. However, what good is it to be poked, jabbed, and given drugs that make you feel even worse just to extend life by a few more days?
Avoiding these discussions increases everyone’s anxieties and hinders loved ones’ ability to move through the grieving process. It also contributes to false hopes of a cure, robbing patients of valuable time to nurture relationships and complete significant tasks before dying, such as arranging funerals, burial wishes, handling finances, taking care of pets and more. Addressing these matters can lift a significant burden from our shoulders and minimize the stress our families may face.
Perhaps more importantly, discussing death allows us to avoid being robbed of the time to “nurture relationships.” When we openly talk about death and dying with our loved ones, we create an opportunity for meaningful exchanges before it’s too late. We can feel empowered to say things like “I love you,” or “I’m sorry,” or “I’m proud of you.” Not addressing these deeply personal issues can haunt a person for a long time.
Starting the conversation is the hardest part. “People always have things to say on the topic,” according to Lisa Pahl, a hospice and ER social worker. “It’s just getting them going.” Talking about death before it is too late relieves us of unnecessary complexity at what is already a very distressing time. It can help everyone in the family feel supported and prepared for what lies ahead.
Start talking while you’re healthy enough to do so. A review of cancer patients found that 79% were capable of discussing their end-of-life wishes when first admitted to the hospital. However, 40% lost that capacity before the talks began, leaving them in the hands of surrogate decision-makers, who were significantly more likely to agree to aggressive treatment, contrary to most patients’ desires.
Unsurprisingly, 90% of people say talking with family about end-of-life care is important, but only 27% start the conversation. (Source: www.theepochtimes.com, “Talking About Death: The First Step to Dying Well,” Sept. 12, 2023)
“The first thing you need to do is determine what you’re afraid of and that’s not just about the dying process. It is about what is going to happen to my loved ones. Who’s going to take care of my house for my wife? These kinds of things can cause a lot of existential suffering,” Dr. Gagne-Henderson said.
Perhaps the best source of help to get this talk started is a guide I found online. It’s called “A Guide: How to Talk About Death and Dying” from St Clare Hospice, U.K. It says, “There is no right or wrong way to have a conversation about death and dying. It is different for all of us. There are so many things that we might want to talk about, including practicalities, and our thoughts and feelings, but it is up to us how we communicate them.”
Remember: it is okay when you don’t know what to say. There will very likely be instances when you are lost for words. As long as you have listened well and are showing consideration and compassion, it will be appreciated that you have shown your care. Above all, it is important to just be there. The following tips that might help to you in your conversations are from the guide:
1. Be respectful. None of us truly know what is going to happen after death, whatever our religious or spiritual beliefs. So, it’s important not to force our viewpoint onto the person. This is their experience.
2. Be honest. Being real and honest with a person can be very liberating and soothing – both for us and the person we are talking to. Although we might want to make a joke, or try to say something witty, sometimes the best thing we can do is hold a hand and be there.
3. Use body language. Don’t be afraid to look your loved one in the eye; it is a keyway of showing that you are listening. Be mindful and attentive to the way you and they are saying things, too. Things like tone of voice, body language, facial expressions, willingness to engage and give eye contact, are all part of the conversation. Say what you really mean and invite them to do the same.
4. Stay calm. Talking about death and dying can understandably bring about feelings and emotions that are difficult to deal with. You might feel embarrassed by the emotional intimacy of a conversation, or fearful of seeing your loved one appear vulnerable. You may feel angry that they are desperate to die, or even relieved, guilty or helpless. Just breathe slowly with both feet firmly on the floor. This will help to accept what is happening and be present.
5. Ask questions. Try indirect questions such as: I wonder if there’s anything you want to talk about? Perhaps you want to tell me about something bothering you? How can I help? This empowers your loved one with the choice to respond, or to say no. If the door is open to talk or ask for help, you have shown that you care and are there for them.
Try leading questions such as:
- If you become really ill, would you like me to sit with you?
- If I become very unwell, can you try to make sure that I die at home?
- Have you ever thought about what you want to do with your belongings?
- Have you thought about what kind of service you would like at your funeral?
Again, this offers your loved one the choice to respond, and may make it easier to think about some of the answers.
6. Use short statements. Short statements that show you care can also provide comfort.
- If there ever comes a time when you want to talk about something or you feel frightened, please do tell me.
- I am always there for you when you need me.
- Although I won’t live forever, I will always love you and be proud of you.
By saying little things that offer reassurance and show that you are a safe person to talk to, they may feel more inclined to open up.
7. Don’t fear tears or emotion. While you should try to remain calm, it is also perfectly okay to express your emotions and be honest about how you feel. Talking about death and dying can bring about a range of emotions, which can be confusing. This is normal! Don’t fear tears; it’s okay to cry. Crying is a natural response to emotional situations and helps us to relieve stress. Be brave enough to let yourself express. Strong emotions can have a powerful healing effect on you, the person you are talking to, and your relationship. It also gives others permission to show their emotions.
8. Be quiet. Don’t feel you have to talk all the time and fill every silence. Just being there quietly and showing someone that you care about can be surprisingly peaceful. It also gives you and the other person an opportunity to think and say what you want to say. If you’re still not comfortable initiating the talk but really want it to happen, here’s a final thought – a
“Death doula.”
“Say what?” you might ask. A death doula is someone who serves as a navigator, advocate, and experienced professional for the dying and their loved ones. Death doula services range from pre-planning to education/support throughout the dying process and after-death rituals and home celebrations.
An end-of-life doula approaches these situations with empathy, helping families come together to have open conversations and ensure that nothing is left unsaid. This provides peace for the dying patient and a sense of closure for the grieving family, which aids in their healing process. They are often present during the dying process and offer gentle guidance and a comforting presence to ease anxiety as the individual transitions from life to death.
Death doulas are quite unique in terms of the services that they can offer compared to hospice care. Hospice care focuses on medical aspects. It focuses on pain management and symptom control using medical treatments. End-of-life doulas provide companionship, emotional and spiritual guidance, and comfort to those facing a terminal illness or death.
Finally, if you would like a copy of the 16-page guide from St Clare Hospice U.K., i.e., “A Guide: How to Talk About Death and Dying,” please call our office at (310) 348-2995. We will be happy to mail you the guide free of charge.
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Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.