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Get it Together!

Dr. Emily McClatchey

Preparation now for your eventual death is a gift to those you leave behind.

Once I got over the initial shock and panic of my cancer diagnosis, relief came when my husband reassured me, “we will assemble the best possible team of oncologists and surgeons and chemotherapy specialists at the best hospitals to figure out the best path forward.” Yes, I thought. I don’t know squat about cancer or how to treat it but I can find out who does and let them take care of that part of it. They can chart the navigation path and I will dutifully set sail wherever they advise me to go. It felt good to surrender that aspect of responsibility, so that I could turn my attention to what was and should be within my control: what kind of attitude I was going to have on this trip.


Further relief came as I discovered other aspects that belonged solely to me:  how long and hard I intended to fight, and yes, what it would look like if and when I ever reached a point in this journey where it was time to stop. Knowing your limits and being aware of them doesn’t make you any less of a fighter or any more willing to give up.


I spent a decent amount of time and energy looking into death, planning how I wanted my life’s end to look, and working to reduce the logistically nightmarish burden I would leave behind for my family to take care of should I die of my cancer. I learned many interesting factoids and was generally nonplussed by the whole endeavor, only to be met with family members and loved ones replies: “No! You can’t think like that! You’ve got to fight!” As if a mindful, considerate death plan indicated I was throwing in the towel and surrendering to a premature death.


Speaking of premature death, what does die prematurely even mean? Before I’m ready? Who is ever ready? That’s the point. I realized that whether death comes for me tomorrow or in ten years or in forty years, I am pretty certain that it will always feel premature, and there will be more I want to do before I die. But preparing now can relieve a giant burden on your survivors, no matter when your time comes. I was relieved to find something I could actively do and check off my list while I was sitting around waiting for the doctors’ interventions to do what they were designed to do. After all, who better to say what’s right for me, and when’s better than now, while I can still say it?


There are really only five crucial elements we all should make sure are taken care of right.this.minute. Five. That is not a lot. You’ve probably already done some of them. So just go do it. 


Five Crucial Elements


1. HIPAA- this acronym stands for the Health Insurance Portability and Accountability Act, which is a US law that protects your medical records and health information. This is important to you because you have control over who receives information about your health. If for some reason you wind up in a position where you are medically unable to give consent to have your information shared, you want to make sure that you have indicated ahead of time who can and should be privy to your health information.  Generally speaking, if the doctor can reasonably infer, based on his or her professional judgment, that you (the patient) would not object to the sharing of your information with someone (like a spouse or a close relative), the information would be shared. For this reason, HIPAA is not the most pressing item on your five point checklist, but for those who do not have a spouse or whose close relatives live out of town, this would be an important document to sign at your next doctor's visit.


2. Medical Proxy (also known as Medical Power of Attorney) - This is paramount and also is likely to be taken care of through the course of your breast cancer journey, especially if you are having surgery. A medical proxy is a legal document that indicates who gets to make all your medical decisions about your care in the event that you are rendered unable to do so yourself. This person should have a deep knowledge of your wishes (item #4), and should not be someone whose own emotions or needs will cloud their judgment or interfere with what you want. It is wise to choose two medical proxies (also known as surrogates or agents): a primary, and a secondary if the primary should be unable to proxy (for example if you and your spouse were in a car accident and both of you were left incapacitated). Please note that this medical proxy is the individual who will make only your medical decisions about your care in your stead. All other decisions, legal and financial, are designated to your:


3. Financial Agent- (also known as attorney-in-fact)- A financial agent is the individual you designate to make all non-medical decisions for you should you become incapacitated. Financial transactions, social security checks, taxes, legal documents, and investments all fall within the purview of the financial agent. Ideally, you would designate a different agent than your Medical Proxy as your Financial Agent, as the responsibilities of each are disparate and involved.


4. Living Will - (also known as Health Care Directive or Advance Directive)- This is the item in your checklist that will take the most time, and perhaps consternation, to take care of. A comprehensive living will addresses your wishes regarding your medical treatment in the event that you are no longer able to give informed consent, and then some. It can detail your wishes about your funeral, the disposition of your body, and how you wish to be remembered. In the state of Massachusetts, this is a non-legally-binding document, but that does not make it any less important to complete. My personal favorite is a document called “The Five Wishes,” which social workers at every major hospital should be familiar with and willing to share a copy of. This document asks you to consider nitty-gritty details about your death, which will bring you in intimate touch with your own mortality. This can be uncomfortable to some, and relieving to others. The truth is, death is a fact of our lives, so being intentional about it as you are other aspects of your life and health care makes sense. Once you have completed this document, you will want to share it with your medical proxy. Trust me, if your medical proxy is ever faced with making decisions for you at the end of your life, they will be grateful to have this detailed account of your wishes. It alleviates anxiety and fear and guilt and is an essential part of your healthcare.


5. MOLST- (also known as “DNR: Do Not Resuscitate”)- This is an acronym Massachusetts uses for Medical Order of Life Sustaining Treatment. (Other states may refer to it as such or as POLST, MOST, POST, or TPOPP). No matter what acronym it goes by, this document is often printed on bright pink paper and stuck on your refrigerator as you near the end of life. It works in conjunction with your Living Will to make clear what your wishes are when you are diagnosed with a serious illness or frailty. This document is meant to give medical orders and tells emergency medical personnel what treatments you want and do not want to have in the event of a medical emergency, hence its presence on your fridge. First responders are trained to check for such a document when called to a home in a medical emergency of an ill or elderly patient. While it is important to think about these things, it is likely premature to post your MOLST on your refrigerator just yet. I mention it here because as you are thinking about your living will, it is good to understand exactly what kind of medical interventions are involved in life’s end stages. 


It is also worth mentioning a fascinating line of research about what is called the hedonic treadmill: a theory which posits that regardless of what happens to people, including cancer, they will eventually return to their happiness baseline.2  This is relevant to consider as you think about what your end-of-life looks like. For example, if you think you’d rather die than not be able to go to the bathroom on your own, you might be surprised by how differently you feel when you reach that point. You may realize that your autonomy in that department wasn’t as tied to your happiness as you thought, and the goal post might shift. This is why it is important to make your ideas about end-of-life known now, but to keep updating them and considering them as time passes. Make sure you keep those you love up-to-date on your wishes, too. 


If all this planning seems daunting, don’t worry. You don’t have to do it alone. Your primary care physician should be prepared and willing to help you through each step of this process outlined here (with the possible exception of #3, as it is outside of medical purview). While we should all complete these steps even in the absence of a serious diagnosis, if you are over 65 it becomes more relevant and pertinent, and- the best part-covered by insurance! Most major insurances follow Medicare’s law entitling anyone over 65 to “advance care planning:” fully reimbursable sessions with your physician to have conversations about your end of life plans and to complete the proper documentation outlined here. At your next encounter with your doctor, initiate the conversation about these items! You’ll be glad you did, and so will your family.


P.S. If you want extra credit, you can even plan and pay for your perfect funeral. Keefe has been helping people do this for more than 65 years.

Green Funerals (A History)

23 Mar, 2021

Wrapping Up Affairs

By Dr. Emily McClatchey • 15 Mar, 2021
After a death, to-do’s abound. I  n my work as an end-of-life consultant, I am often charged with helping surviving loved ones wrap up the affairs of the deceased. This is no easy task, and is only made more challenging by grief and emotional upheaval that can make even getting out of bed feel like climbing Mt. Everest, not to mention raising kids and tying up an endless list of loose ends. In my work with survivors, I have put together a simple guide culled from several different sources to make the process of wrapping up the affairs of the deceased a little more simple and straightforward.

Children and Loss

By Dr. Emily McClatchey • 15 Mar, 2021
When Facing a Death, Kids: Seek Validation. Acknowledging the child’s loss affirms a child’s sense of himself as a valuable, legitimate member of a family and larger society. Adults should speak directly, frankly, and immediately about death to a child, using concrete language and avoiding euphemisms like “resting in peace” or “gone to a better place.” In empathically engaging with a child about death, you should not be too worried about upsetting them or making things worse. Like adults, children benefit from social support: it reduces stress and makes us less prone to lasting psychological problems. Try to let the child lead, listening carefully to her and giving her direct and simple answers to any questions she may have. Crave Ritual. Loss can make children feel even more out of control than usual. Providing them with a chance to hold a ceremony or ritual promotes their sense of personal agency. Establishing a predictable, clear routine is especially important given the changes that inevitably accompany loss. Knowing what to expect gives kids a sense of authority when they otherwise feel powerless. Struggle to Understand. At any age, disbelief and denial are common responses to loss. The natural brain development of children puts them at a disadvantage in coming to terms with the loss. Children do not have the capacity to fully grasp concepts, may ask repetitive questions, or may be confused. A clear, consistent message delivered patiently in frank language by someone they trust is best. Tell Their Stories. Children are naturally drawn to stories and storytelling. Storytelling creates cohesion and fosters understanding. By becoming authors of their own experience, children can regain a sense of control and understanding about their loss. Allowing children the freedom to tell their stories gives them a sense of self-competence and confidence as they face challenges. Journaling, drawing, creating and communicating with others about loss promotes healing from grief and honors the child’s relationship with that which has been lost. Collect Mementos. Children are natural collectors. In the event of a loss, this tendency to collect may intensify. This comes from a desire to reinforce their developing identities and possess items that they like and identify with. During loss, kids often seek keepsakes, items, and ways to honor and memorialize that which has been lost. Importantly, many children fear that they will forget those who have died. Memories fade over time, especially in minds that are still developing at the time of the loss. This is scary for children who cling to memories as their only way to remain connected to the deceased. You can help your child curate and store items in a special container that keep memories alive. Feel the Pain. Children somaticize, meaning they tend to express grief through their bodies rather than putting words to their complex emotions. After a death, you might notice an increase in aches, pains, and boo boos. Stomach and head aches are common. Children also may act out aggression, anxiety, and sadness through their bodies. Soothing words and gestures will help them understand that you recognize their pain and will tend to them. Experience Fear. Anxiety, fears and worries escalate in times of loss. Many children regress to behaviors they have outgrown or that are more commonly seen in younger children. You may notice sleep difficulties, nightmares, or a fear of the dark. In school, students may have difficulty concentrating, may easily lose focus, or may develop academic troubles. Over time, this should subside, so don’t be too afraid to indulge them a little with childlike measures to make them feel less afraid, like a nightlight, worry dolls, or a stuffed animal at bedtime. Feel Guilty. Although unwarranted, guilt is a common response in children when they experience the death of a loved one. Natural aggressive feelings like sibling rivalry, frustration, and parental opposition are all healthy parts of growing up. Unlike adults, though, children aren’t yet able to draw firm lines between reality and fantasy. They may mistakenly believe that their aggressive feelings somehow inflicted real pain or caused a death. They may fear that any anger they feel after a death makes them inherently bad. Children need to be reassured that they are not to blame for the death, and that anger is normal. They also need space to honor and express their love for the deceased, to reinforce the self-perception that they are loving and kind. Are Still Kids. Play is the work of childhood. Children use play to work out aggression, to manage anxiety, and of course, to have fun! In the face of loss, they often vacillate between grief and play, and may surprise you with their easy ability to shift attention away from grief rather than wallowing as adults tend to do. And being kids, they love gifts, treats, and mail- a personalized touch that says I love you, I understand you are suffering, and I wish you well can go a long way.

What on Green Earth is Water Cremation?

By Dr. Emily McClatchey • 15 Mar, 2021
Ashes to ashes the green way. Water cremation known by any other name (Alkaline Hydrolysis, Aquamation, Flameless Cremation, Resomation, Biocremation) is still water cremation. But what on earth is it? The Cremation Association of North America describes the process, developed in the 1990s, as "a water-based dissolution process for human remains that uses alkaline chemicals, heat, and sometimes agitation and-or pressure, to accelerate natural decomposition."

The One Thing To Not Say

By Dr. Emily McClatchey • 15 Mar, 2021
Meeting someone in their grief is hard. We can help. My friend had longed for, tried for, prayed for a baby for a long time. And now she cradled her precious stillborn baby girl in her arms. “At least,” her mother said to her, “the baby died before she grew up. Imagine if you had had her for a few years and then had to lose her.” My friend and I have known each other for years, but this was the first time she was talking to me about this experience, 20 years in the past. Her pain was still raw, palpable, and contagious. “But she didn’t understand. I would have given anything, anything, to spend even one hour with her alive.” To be in the presence of another person’s suffering is sacred. It is also terrifying, as sorrow that great threatens to swallow whole anyone who bears witness. I listened to my friend, cried with her, and felt angry at her mother’s seemingly insensitive response to this tragedy. But then I recognized that her mother’s only intention was to stem her daughter’s unbearable agony. This is human: a desperation to ease our loved ones’ pain. I became aware in that moment of my own acute desire to make it better for her, twenty years later. At the same time, I was fearful of committing the same crime, inadvertently wounding my friend further. What could I say? It’s not as if I haven’t had practice. As a therapist, my job is listening and responding to difficult stories. My business sending care packages to grieving children immerses me in the pain of others. My doctoral work featured interviews with Holocaust survivors. Yet here I was, silenced by my fear of the clumsy misstep. Now that I have cancer, I am on the receiving end of efforts to ease my suffering. While I recognize that the intentions are uniformly kind and aimed at alleviating pain, I have sometimes cringed at others’ inelegant reactions to my news. I have come to the conclusion that there is really only one rule that matters when bearing witness to another’s suffering. At all costs, avoid any statement that begins with “at least….” “At least it didn’t spread.” “At least he didn’t suffer.” “At least you got to say goodbye.” Why is it so hard for us to find the right words for the sufferer? We feel uncomfortable and helpless, so we strive to do something that brings comfort, not only to the sufferer but also to ourselves. We want to feel like we are helping; we want to be uplifting, hoping that somehow our optimism’s momentum can pick up the other person and drag her from despair. Empathy can be a powerful antidote to pain, but empathy asks a lot. Empathy requires us to join others in their dark place and match their tenor. When we empathize with someone in pain, we experience pain too, our mirror neurons firing in the same sad, desperate patterns. We listen and we hear heartbreaking melodies in minor keys; we feel the agony in the music. The moment we move toward a solution, we attempt to be uplifting, the moment we utter the words “at least…,” we have jumped to a higher octave, a more cheerful note in a major key. We are now singing out of tune with the sufferer. “At least…” not only signals a break in empathy, it also induces guilt. Any statement that begins with these words will be followed by the identification of a privilege, an indication of the ways in which the sufferer’s situation could be worse. What is the result? The sufferer is implicitly called to agree, to assuage the speaker. “Yes, you are right. Thank you for pointing that out.” All the while, the sufferer feels guilty. “Maybe I don’t have a right to wallow.” As a therapist, I heard this a lot, this guilt in feeling pain when so-and-so had it worse. But the most damaging result of, “at least” isn’t the break in empathy or the call to guilt. It is the fact that the use of “at least” effectively robs the sufferer of the chance to activate her own resilience. She can no longer discover the silver lining herself if you’ve preemptively pointed it out. Educational philosopher Maria Montessori once wrote about a little boy who, smaller than his peers, was struggling to see what was happening in the playground’s water basin around which the bigger and older children had excitedly gathered. This boy spotted a stool on the far end of the playground, dragged the heavy thing clear across the yard, and was just about to mount it and peer in when a teacher noticed his struggle and lifted him up to see over the top of his classmates’ heads. Montessori expresses her disappointment: “Undoubtedly the child, seeing the floating toys, did not experience the joy that he was about to feel through conquering the obstacle with his own force…. His intelligent efforts would have developed his inner powers… the little fellow had been about to feel himself a conqueror, and he found himself held within two imprisoning arms, impotent.” Trust me, there are plenty of “at least’s” with my cancer. At least I caught it early. At least we have good insurance. At least our kids are well supported. At least we have the financial and educational resources to advocate for the best treatment. There are silver linings everywhere. But I don’t want you to point them out to me. You might get them wrong. You might make me feel guilty. You might short-circuit my process. Let me generate and discover my own “at least’s.” Don’t rob me of my opportunity to summon my own inner powers, to conquer my own obstacles, to discover my optimism. Let your thought of “at least” trigger alarm bells. “Warning! Danger Ahead! Use Caution!” Instead, try a gentle hand on a shoulder. Try a “tell me more about your experience.” Or try silence and a listening ear.

The Comfort of Objects

By Dr. Emily McClatchey • 15 Mar, 2021
Children (and adults!) activate resilience through special connections to things. The night before I headed into the hospital for my double mastectomy, my daughter gave me her stuffed dog. “Chancy will take care of you while you are in the hospital,” she told me. Initially, I was reluctant to take her up on the offer. I had visions of losing Chancy, or spoiling him with hospital germs. At that time, Chancy wasn’t the most prized of my daughter’s furry friends, but he was important. He had been gifted to her when she had spent the previous holiday in the emergency room replenishing her fluids with an IV when a nasty bout of the stomach flu left her dehydrated. A hospital social worker delivered Chancy as a parting gift as if to say, “thanks for participating in our program.” At the moment the social worker handed my daughter the dog in that emergency room, an ordinary dog was stamped with extraordinary meaning, bringing a small measure of comfort and specialness to a bleak situation. He was cute and cuddly, but more importantly, he was a symbol of recognition of my daughter’s suffering. The giver recognized that there were other places a six-year-old would rather be than the emergency room on Christmas Eve. Chancy helped her feel recognized and comforted. Once I brought Chancy home from the hospital after my surgery, his position in the Stuffy Hall of Fame was secure. He became my daughter’s full-on lovie and ever-present bedtime companion. He had served his family faithfully in their time of need, first my daughter, and then me. By accepting her offer to bring him with me, I had helped my daughter feel that she had contributed something meaningful, helpful and loving to ease my suffering. And indeed, when I woke up after my procedure and found Chancy in my recovery bag, I tucked him into bed and let his fuzzy comfort remind me of the love of my family. Having something soft to cuddle can provide a soothing function that can impact our emotional well-being. In one particularly interesting study, adults were made to feel either socially included (they were told “others chose to work with you this research task”), or excluded (“no one wants to work with you”). Afterwards, half of the subjects were invited to hold a teddy bear while answering questions about their emotional state. Among those who were excluded, those that held teddy bears expressed significantly more positive emotions. The researchers hypothesize that the mere act of touching a teddy bear might foster positive emotions and mitigate loneliness. We have long known of the importance of soft touch for babies. Infants have a vital, universal need for what Harry Harlow called “contact comfort:” the soothing physical connection to the soft and cozy. This need is so basic, it can even be met with inanimate objects. In his series of studies with primates in the 1950’s and 60’s, Harlow demonstrated that in the presence of a stand-in, terry cloth “surrogate mother,” infant monkeys explored their environment more freely and demonstrated significantly less fearful and isolating behavior than those monkeys with a wire surrogate. The monkeys’ ability to nuzzle the terry cloth surrogate protected them from the paralyzing, regressive, fearful behavior demonstrated by the monkeys with the cold, hard, wire surrogate mother. This contact comfort continues through childhood. Objects can help reinforce a sense of safety and security in tough times, and they become imbued with special meaning for children. In psychology, we call them transitional objects or comfort objects: they provide comfort as the child gradually transitions from dependence on parental figures to independence. According to the traditional developmental psychology’s attachment theory, the realization that we are separate beings from our caregivers occurs to us in infancy, and is experienced as a loss. We suddenly realize that we are utterly dependent and powerless, alone in the world and at the mercy of our connection with our caregiver. This anxiety prompts us to bond with inanimate objects that are inextricably associated with the soothing comfort and care of our primary caregiver (traditionally the mother), and this helps us maintain closeness and connection with mom, even in her absence. Through transitional objects, we are able to maintain the bond with mom via her “stand in” comfort object when she is increasingly separate. The security blanket, pacifier, or “lovie” is born. Transitional objects are soothing and beneficial for healthy development even in the absence of a major disruptive event, but can be especially important in times of trial following a death. They offer features that can be critically important for children’s coping mechanisms. In his landmark research about transitional objects, psychologist Richard Passman observed: “At times, the blanket seems more meaningful to an aroused child than does the mother herself.” Why would the upset child prefer an object even when mom is available? Because unlike mom, the object is totally under the aegis of the child, and he or she can exert total control over it instead of being at the mercy of its availability or independent functioning! The second helpful feature of a comfort object is that it offers the child a powerful opportunity for role reversal: the child can be in charge of taking care of it. The helpless stuffed animal becomes a psychological holder for the child’s fears and feelings of helplessness following the death of a loved one. The child can work through that anxiety in displacement- a less threatening, arms-length working through of difficult emotions from the position of the omnipotent caregiver. Chancy is afraid of the dark, so I have to turn the light on for him. A seminal research project from the 1970s reveals just how impactful this caregiving responsibility can be for people who have little control over their environment. Judith Rodin and Ellen Langer conducted an experiment in a nursing home in which they gave residents a houseplant. Half were told that the staff would care for the plants (the “control” group); half were in charge of taking care of the plants (the “engaged” group). The psychologists were astonished to find that a year later, those that were in charge of taking care of their house plants were more cheerful, active and alert than those who were not in charge, and less than half as many of the engaged group had died at the point of follow up compared to the control group. Of course, children are not nursing home residents, and plants are not transitional objects. But perhaps we can learn from this study how helpful it can be to give our un-empowered little people an opportunity to take care of something, especially in times of trial. If being responsible for a houseplant can be beneficial, this begs the question: what about a pet? A pet offers all the same aspects of a transitional object (and then some!): often soft, cuddly, yours, ready to receive care, and a holder for all kinds displaced of emotions (without a voice to object or correct). In fact, psychologists have investigated children’s experience with pets in their family, and by the children’s own account, they use pets as transitional objects. Pets can be wonderful companions and confidants to people of all ages, and kids don’t hesitate to make use of them to help them through hard times. While I have tried to provide the social science behind why kids get comfort from objects, as a parent I’m sure you’d chide me that your common sense tells you all you need to know about your child’s attachment to a special stuffed animal or blanket. In fact, your child’s connection to a special object should demonstrate to you that children are incredibly resilient, and will often seek out what they need, even as infants, even in the absence of parental intervention or guidance. But I’ve included it as a core tenet in helping kids cope with the death of a loved one because I think it is important to recognize and honor their efforts to help themselves. Doing so will help you - and them- remember that even though they are children, they have effective tools at their disposal to cope with life’s challenges.
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