Modern burials and death practices are changing how we die and where our bodies go after we die.
Why it matters: Today, the funeral industry is worth $17 billion ($). Businesses are innovating on traditional practices, and more people are taking control of how they wish to die and be buried — in unconventional, surprising and even extraterrestrial ways.
It now ends with most of us getting turned into dust and obituaries posted online. Some new burial practices and places include:
Orbit in outer space. SpaceX recently launched the cremated remains of 152 people on its Falcon Heavy rocket. A company called Celestis facilitated these “funeral flights,” charging over $5,000 for 1 gram of “participant” ashes.
Transformation into a diamond. Engineers can turn the carbon from human ashes into diamonds that are physically and chemically identical to natural diamonds.
Green burial. Touted as an environmental and financially friendly option, green burials can be as simple as wrapping a body in a cotton shroud and lowering it to the ground — factoring out conventional vaults, coffins and embalming.
Green cremation. Instead of using flame, green cremation uses heated water and an alkali solution to accelerate the natural decomposition of the body.
Celebration of life ceremony. In lieu of a somber funeral, an end-of-life ceremony celebrates a person’s life and legacy, often with a dedicated event planner, a speaker and activity lineups.
Digital tombstones: One Slovenian cemetery is experimenting with digital tombstones that can show pictures and video, and potentially link to a smartphone application for interactivity.
Smart library. One Tokyo crematorium allows you to summon ashes with the swipe of a card: A machine transports the ashes from an underground vault through a conveyor belt to the right room.
Memorial reef. Florida-based company Eternal Reefs mixes ashes with “reef ball” material, creating memorial reefs that can serve as habitats for sea life.
Living wake. Some people are attending their own funerals ahead of death — by holding a “living wake,” offering family and friends a chance to say goodbye.
Live-streamed funerals. An estimated 20% of funeral homes offer livestreaming, allowing those who can’t make it to a funeral to share the experience — and those who’ve attended to look back on it.
Disney World. About once a month, Disney employees clean up scattered remains ($) in the park, where visitors sneak in ashes to disperse at Cinderella’s castle, on the Pirates of the Caribbean ride and throughout the Haunted Mansion.
The outcomes of medical aid-in-dying laws in the two states with the longest-running programs in the U.S. show many similarities in who is using the option, a new study finds.
With more states implementing laws to assist terminally ill patients in taking their lives, researchers from across the United States examined empirical data of Oregon and Washington to find out if there were similarities in who’s asking for and taking medical aid-in-dying prescriptions. The data came from published annual reports from the Oregon Health Authority and Washington State Department of Health that ranged from 1998 to 2017 in Oregon and from 2009 to 2017 in Washington.
They found that 2,558 – 76% – of the 3,368 written prescriptions resulted in patients’ deaths, with patients more likely to be non-Hispanic white (94.8%) and 65 years or older (72.4%). The most common underlying illnesses were cancer (76.4%), neurologic illness (10.2%), lung disease (5.6%) and heart disease (4.6%), with loss of autonomy, impaired quality of life and loss of dignity the most common reasons reported by clinicians for patients who pursue medical aid-in-dying. Ages of all participants over the time periods ranged from 20 to 102, and participation was nearly equally split between males and females.
“Among patients who ingested the lethal drugs and were evaluable for complications, only 4% experienced complications, the most common being difficulty ingesting or regurgitation of the lethal drug,” according to the study, published Friday in JAMA Network Open. “Short median times to unconsciousness and death prevent undue and lengthy suffering and reflect the efficacy of drugs used in (medical aid-in-dying).”
Further, the majority of patients who received the prescription had some college education (71.5%), had medical insurance (88.5%) and were enrolled in hospice care at the time of their deaths (76%). A total of 2,075 (81%) of the patients died at home, the study said.
So far, nine jurisdictions – eight states and the District of Columbia – have implemented medical aid-in-dying laws since Oregon’s went into effect in 1997, with New Jersey becoming the most recent on Aug. 1. Maine will join the group on Sept. 15, when its law goes into effect.
But using empirical data to show the demographics behind these longstanding laws portrays that the standard is inherently ethically good when data “cannot tell a society or a profession what ought to be done,” Dr. Daniel Sulmasy, acting director of the Kennedy Institute of Ethics and professor of biomedical ethics at Georgetown University and critic of the practice, wrote in an invited commentary that accompanied the study.
“Whether just 1 person or 100 000 persons legally avail themselves of lethal prescriptions cannot tell us whether the practice is right or wrong,” Sulmasy wrote. “Despite public arguments that (physician-assisted suicide) is needed to avoid excruciating pain and other symptoms, the reasons attributed to patients who seek PAS are not uncontrolled symptoms but lost autonomy, independence, and control.”
“About one-third of patients die without taking the drugs, which may suggest that patients only wanted the security of having a way out, but it could equally indicate that they died before using the drugs or changed their minds about using them,” he added.
Among its limitations, the study notes that the underlying reasons patients requested medical aid in dying were not collected from the patients themselves but rather from the physicians in a follow-up questionnaire. Still, the results presented show no intentional targeting of “socially disadvantaged patients,” an often cited concern among critics, and “most patients who acquired lethal prescriptions had cancer or terminal illnesses that are difficult to palliate,” according to the study.
“There is significant room for further integration of palliative care, social support services and case management in end-of-life decision-making with the intent of increasing the options available to those facing a terminal disease,” the study said.
When a hospice counselor is called to the bedside of a child who has just died, he leads the parents through a Buddhist ritual for cleaning the body. In the process, he guides them through the fires of grief, which burn away everything but love.
One day, in the middle of writing a foundation grant report, I got a call from a man I didn’t know. He explained that he was the father of a 7-year-old boy who had been very ill with cancer. Some people had told him that I might be able to help him out.
I said certainly, I would be willing to help the family through their grieving process. I made some suggestions about how I might be able to support when the time was right.
The man paused. It was clear that I didn’t understand yet what was happening. He practically whispered, “No, Jamie died a half hour ago. We’d like to keep our boy at home in his bed for a little while. Can you come over now?”
Suddenly, the situation wasn’t hypothetical; it was real and staring me in the face. I had never done anything like this before. Sure, I had sat at the bedsides of people who were dying, but I had not attended the death of a young child with two grieving parents in unimaginable pain. I honestly had no idea what to do, so I let my fear and confusion arise. How could I possibly know in advance what was needed?
I arrived at the house a short while later, where the dispirited parents greeted me. They showed me to the boy’s room. Walking in, I followed my natural inclination: I went over to Jamie’s bed, leaned down, and kissed him on the forehead to say hello. The parents broke into tears, because while they had cared for him with great love and attention, nobody had touched the boy since he had died. It wasn’t their fear of his corpse that kept them away; it was their fear of the grief that touching him might unleash.
I suggested that the parents begin washing the boy’s body— something we often did at Zen Hospice Project. Bathing the dead is an ancient ritual that crosses cultures and religions. Humans have been doing it for millennia. It demonstrates our respect for those who have passed, and it is an act that helps loved ones come to terms with the reality of their loss. I felt my role in this ritual was simple: to act with minimal interference and to bear witness.
The parents gathered sage, rosemary, lavender, and sweet rose petals from their garden. They moved very slowly as they put the herbs in warm water, then collected towels and washcloths. After a few moments of silence, the mother and father began to wash their little boy. They started at the back of Jamie’s head and then moved down his back. Sometimes they would stop and tell one another a story about their son. At other times, it all became too much for the father. He would go stare out the window to gather himself. The grief filling the room felt enormous, like an entire ocean crashing upon a single shore.
The mother examined and lovingly cared for each little scratch or bruise on her son’s body. When she got to Jamie’s toes, she counted them, as she had done on the day he was born. It was both gut-wrenching and extraordinarily beautiful to watch.
From time to time, she would look over at me as I sat quietly in the corner of the room, a beseeching question filling her eyes: “Will I be able to survive? Can I do this? Can any mother live through such loss?” I would nod in encouragement for her to continue at her own pace and hand her another washcloth, trusting the process. I felt confident that she would find healing by allowing herself to be in the midst of her suffering.
It took hours for the parents to wash their son. When the mother finally got to the face of her child, which she had saved for last, she embraced him with incredible tenderness, her eyes pure reflections of her love and sorrow. She had not only turned toward her suffering; she had entered into it completely. As she did, the fierce fire of her love began to melt the contraction of fear around her heart. It was such an intimate moment. There was no separation between mother and child. Perhaps it was like his birth, when they had the experience of being psychologically one.
After the bathing ritual was complete, the parents dressed Jamie in his favorite Mickey Mouse pajamas. His brothers and sister came into the room, making a mobile out of the model planes and other flying objects he had collected, and they hung it over his bed.
Each one of them had faced unbelievable pain. There was no more pretense or denial. They had been able to find some healing in each other’s care and perhaps in opening to the essential truth that death is an integral, natural part of life.
Can you imagine yourself living through what these parents did? “No,” many of you will say, “I cannot.” Losing a child is most people’s worst nightmare. I couldn’t endure it. I couldn’t bear it, you may think. But the hard truth is, terrible things happen in life that we can’t control, and somehow we do bear them. We bear witness to them. When we do so with the fullness of our bodies, minds, and hearts, often a loving action emerges.
And sometimes they act with enormous compassion toward others who have suffered similarly or who may yet in times to come.
One of the most stunning images of this that I can recall came after the major earthquake and tsunami disabled the Fukushima nuclear power plant in Japan. A photo in the newspaper revealed a dozen elderly Japanese men gathered humbly, lunch baskets in hand, standing in a line outside the plant’s gates. The reporter explained that they were offering to take the place of younger workers inside who were attempting to contain the radiation-contaminated plant. In total, more than five hundred seniors volunteered.
One of the group’s organizers said, “My generation, the old generation, promoted the nuclear plants. If we don’t take responsibility, who will? When we were younger, we never thought of death. But death becomes familiar as we get older. We have a feeling that death is waiting for us. This doesn’t mean I want to die. But we become less afraid of death as we get older.”
Suffering is our common ground. Trying to evade suffering by pretending that things are solid and permanent may give us a temporary sense of control. But this is a painful illusion, because life’s conditions are fleeting and impermanent.
We can make a different choice. We can interrupt our habits of resistance that harden us and leave us resentful and afraid. We can soften around our aversion.
We can see the way things actually are and act accordingly, with wise discernment and love.
The Thai meditation master Ajahn Chah once motioned to a glass at his side. “Do you see this glass?” he asked. “I love this glass. It holds the water admirably. When the sun shines on it, it reflects the light beautifully. When I tap it, it has a lovely ring. Yet for me, this glass is already broken. When the wind knocks it over or my elbow knocks it off the shelf and it falls to the ground and shatters, I say, ‘Of course.’ But when I understand that this glass is already broken, every minute with it is precious.”
After being with Jamie’s parents as they bathed their son, I returned home, and I held my own child very close. Gabe was also 7 years old at the time. I saw clearly how precious he is to me, what a joy he is to have in my life. While I felt devastated by what I had witnessed, I also was able to appreciate the beauty in it.
Grief is disenfranchised when others avoid talking to someone about a painful loss or use a cliché that minimizes that loss. When this happens, the visible evidence of the grief tends to disappear from public sight. Corr (1999) states that whether these types of responses to a loss are careless, unintentional, or a deliberate “restriction of the meaning of grief to its emotional components is an unrecognized form of disenfranchisement of the full grief experience” (p. 9). Essentially, when a loss is minimized, the griever may feel tentative or inhibited about grieving the loss publicly. Doka defines this concept of disenfranchised grief as grief that is not or cannot be openly acknowledged, socially validated, or publicly supported (Doka, 2002a).
There are three primary concepts that serve to disenfranchise someone’s grief: 1) the relationship between the griever and the deceased is not recognized, 2) the death or loss is not recognized, and 3) the griever’s ability to grieve is not recognized (Corr, 1999). This article will address these three concepts through the use of case examples. Loss, in this article, is defined as the disappearance of something cherished, such as a person or possession to which there is an emotional attachment or bond (Zoll & Shiner, 2017).
The Relationship Is Not Recognized
Through the foster system, a couple was attempting to adopt two young girls, ages one and three, who had been living in their home. During the four months of foster placement, the couple had developed a parent-child relationship with the girls. At the custody hearing, the judge awarded custody to a distant relative of the biological mother. For all intents and purposes, the couple had lost the parental relationship with the girls, a loss that felt as significant as losing legally defined “daughters.” The couple observed, for a short time, that although their loss was recognized, it seemed that the significance and depth of loss was not. The couple reported feeling a sense of abandonment by those closest to them. In their experience, “nobody understood, and nobody brought it up, so they could understand.” The response, “At least, they got to be with you for that time” (M. & J. Schwartzman, personal communication, February 11, 2018), seemed to diminish the magnitude of their grief. Ten years later, that loss was still palpable to the couple. Loss, in this case, was related to the significant emotional bond that the couple had formed with the girls.
The Loss Is Not Recognized
Many losses that are stigmatized by society as “not worthy” of grief are grieved silently and privately. Death-related losses such as suicide or drug overdoses, either intentional or unintentional, may fall into this “not worthy” category. Non-death related losses may also fall into this category, such as losses related to domestic violence or addiction. Holderness (2018), who recently publicly described the abuse that she suffered at the hands of her ex-husband, says that her ex-husband’s anger and her experience of “being subjected to his degrading tirades for years chipped away” at her independence and sense of self-worth. “I walked away from that relationship a shell of the person I was when I went into it, but it took me a long time to realize the toll that his behavior was taking on me.” Looking back on her experience, Holderness describes a loss of safety and security, a loss of relationship, loss of her independence, and loss of her self-worth. Such multiple losses are frequently associated with domestic violence (Hollinger, 2010)
Significant losses are intrinsic to addiction and to addiction recovery. Addiction is a pervasive and significantly distressing disorder that can consume a person’s life. Long-term addiction to substances or to behaviors can lead to losses that go unrecognized in the form of damage to or termination of relationships, loss of job and/or career, decline in financial status, and deterioration of health. (Mager, 2016).
Acknowledgment of a loss is intrinsic to the recovery process. To maintain sobriety, a person struggling with addiction is often asked to give up many of the people, places, and things that are associated with the active addiction. They are often asked to give up anything that “triggers” the addictive behavior. For example, in the case of alcohol or substance use disorders, related losses might include relationships with friends and family members who are associated with the use of alcohol and could include the prohibition of visiting or frequenting associated venues. Likewise, a job or career that does not support recovery efforts and the maintenance of sobriety may become a casualty and loss. Feelings of loss and subsequent grief occur with each part of one’s current identity that must be given up to achieve and maintain recovery (Mager, 2016).
The Griever Is Not Recognized
When Lynn Shiner’s two children, Jen (age 10) and Dave (age 8), were murdered by her ex-husband who then took his life, Lynn was the obvious griever. Her grief was thrust unwillingly into the media spotlight.
At the time of the murders, Lynn was in a relationship with a man who later became her husband. Her boyfriend’s trauma and grief went essentially unrecognized for, probably, several reasons. First, though Shiner’s boyfriend had a close relationship with the children, he was not their father. Second, from outward appearances, he pushed his own grief aside as he focused on being a caregiver of Shiner and her grief, though he reports he did privately grieve with Shiner. Third, his friends questioned his motives for remaining in the relationship and, on more than one occasion, suggested that he run the other way. In his love for Shiner, he remained committed to the relationship. Members of his support system were incredulous of this attitude and of his decision to stay in the relationship. Though there is no question that he had an emotional bond with Shiner’s children, and that he deeply grieved their loss, publicly, his grief was essentially invisible (P. Shiner, personal communication, January 11, 2017).
Shannon Wood, the best friend of Shiner’s murdered daughter Jen, was not aware, until after the murders, of the violence to which her friend was exposed. Wood describes herself as an indirect victim of the domestic violence in Jen’s home. Wood says that she still remembers the fear that she experienced the first year after Jen’s death, as a 10-year-old. “I didn’t like going into dark rooms by myself, because I feared Jen’s father would be there, or my dad would ‘do’ something, or that somebody would, in some way, hurt me.” The loss that was being felt by this young girl, who was grieving the loss of her best friend, went unrecognized. Wood felt isolated in her loss and believed that no one could fathom how she felt. Her proof was the silence she encountered on the topic of Jen’s death. After the funeral, there was little recognition or acknowledgment that Wood had lost her best friend. Her grief quickly became disenfranchised, her fears invisible to others (S. Wood, personal communication, February 8, 2018). It has been suggested that young children may be incapable of grieving or do not have the need to grieve (Corr, 1999). This example proves otherwise.
Recognizing Unrecognized Grief
Following a loss, an essential element of the healing process is that the loss be recognized and validated. In the cases cited above, the losses were essentially not perceived as legitimate. When treating individuals whose grief has been disenfranchised, “The goal is always the same, to enfranchise the disenfranchised griever” (Doka, 2016, p. 222). Hartwell-Walker (2018) sees the roles of therapists as “providing what an individual’s immediate social world either can’t or won’t” (p. 2). Therapeutically, it is helpful for grief counselors to legitimize and validate a client’s feelings and to assist them in identifying aspects of disenfranchised grief.
One of the aspects of disenfranchised grief to be identified by a client may be the empathic failure of others to understand the client’s experience of emotional pain and the subsequent inability to acknowledge the client’s grief (Doka, 2002b). Other factors associated with disenfranchised grief may include the individual’s own sense of shame and guilt regarding a loss with the perception that their grief is not valid in the eyes of others. Such minimalization can inhibit both the acknowledgment of a person’s own grief and the solicitation of social support from others. On an interpersonal level, others simply may not acknowledge, validate, or offer support for the grievers, as in the case of the failed adoption example above (Doka, 2002b; Hartwell-Walker, 2018). Losses associated with social stigma, such as suicide, a drug overdose, addiction, or abortion, fall into this category.
Recognition and validation of the multifaceted aspects of loss and grief should be sought throughout the therapeutic work to empower those experiencing disenfranchised grief. Beyond identifying factors that contributed to empathic failure of others, interventions might include individual therapy, narrative therapy, support and self-help groups, and the therapeutic use of ritual. It is important that interventions help provide a sense of either individual or shared validation of the experienced loss and that the grief be normalized within a safe and supportive environment.
Therapeutic rituals can include, but are not limited to, planting a tree or flowers in memory of the deceased, donating to a beloved charity of the deceased, visiting the burial site, carrying an object that is a reminder of the deceased (such as a piece of jewelry or other personal possession of the loved one), creating epitaphs or artistic expressions of love and grief, writing letters to the deceased, and/or establishing a Facebook memorial. These rituals help to affirm, either publicly or privately, the legitimacy of the griever’s loss (Doka, 2002b; Herbert, 2011; Winokuer & Harris, 2012).
Finally, social workers working with individuals with disenfranchised grief should remember the acronym LEVELS: Listen, Empathize, Validate, Educate, Legitimize, and Support the individual’s experience of loss.
I found myself terminally ill and unexpectedly single at 40. I didn’t know which was more terrifying.
By Josie Rubio
One night, as a friend and I were headed to a bar to see someone I had met on a dating app, she asked, “What do you tell these guys?” I pulled up my profile and handed her my phone.
“I have cancer so if you want to hang out, act now!” reads the first line.
“This is great,” she said with a laugh.
A year ago, when my treatment was going poorly and I was getting sicker, my boyfriend of 12 years took a business trip to London, where he “reconnected” with an old friend, a recently separated Pilates instructor. After he booked himself a solo trip to Europe, I overheard him talk about how much fun he had riding around on the back of her motorcycle, holding her hips. He also said he enjoyed walking around by himself without thinking about cancer. And me, apparently.
And that was it. Our relationship was over. I found myself dying and unexpectedly single at 40. I didn’t know which was more terrifying.
My cancer isn’t going away. It’s being treated as a chronic disease. I’m definitely going to die from it, if I don’t get hit by a bus. (Why do people always offer that as an alternative to dying of cancer? “You never know!” they say cheerfully. “You could get hit by a bus tomorrow!”) Doctors buy me time and wellness with treatments, injections and transfusions. I have months of wellness, if I’m lucky. But over all, probably not much time.
The truth is, I was prepared to die instead of date again. From what some people told me, I might as well already be dead as a single woman over 40.
Right after the breakup, I resisted dating. I knew I’d have limited time to spend with people I care about before I got sick again. Why would I want to meet strangers? Still, friends pushed me into it. Sometimes literally. At Octoberfest in Copenhagen, the friend I was visiting declared, “You can’t let your last experience be so awful,” as he steered me into a crowd of Danish men in lederhosen drunkenly dancing and singing to “Time of My Life.”
Back home, my resolve weakened. One night I saw my ex at a concert with the woman he left me for. I didn’t feel sad or jealous, just relieved it was her and not me putting down a credit card at the bar to buy his drinks. It was time to move on.
One friend helped me sign up on a dating app. Another — the person who would become my dating app Sherpa — helped me with my profile and photos. “This guy has a picture of himself with Bill Murray,” I noted as I started swiping for the very first time. “Tinder is full of pictures of Bill Murray,” my friend said sagely.
Since my cancer diagnosis six years ago, I’ve had poison pumped into my veins, tubes threaded into my neck, organs removed, radiation tattoos applied. I’ve shaved my head multiple times. I’ve coughed up pieces of my esophagus. Doctors have given me a spinal tap and rooted around my bone marrow with a needle. But meeting a stranger for a date filled me with dread. “I’d rather be getting a bone marrow biopsy,” I texted my friends before marching out to meet my first date in more than a decade.
But I went. And it was fine. Fun, actually. So I stuck with it and dated some more.
After one great date, I had a crushing realization: I have only the present to offer, not a hopeful future. “You don’t know that,” a friend told me.
“Because I could get hit by a bus tomorrow?” I replied with a weak smile. Within a month I had given myself a black eye, chipped a tooth and skinned my knee. That morning, I had almost stepped off a curb into the path of an oncoming van. The likelihood of meeting my end slipping in the shower actually seemed to be edging out the cancer.
“No,” she replied. “Because you could still be complaining to me about dating when you’re 90.”
As I went, I made dating rules, then broke them. I pay for myself, because letting someone else pay feels too transactional. Plus, after years of paying for myself and my ex, it still seems like a good deal. I don’t eat on first dates, because it’s an ugly scene.
Then, after a meet-up drink, someone asked me to have dinner with him and insisted on paying. I told him, as I devoured a duck breast like I was a medieval king, that I don’t eat lambs because they’re cute, and I don’t eat octopus because they’re smart, but it’s O.K. to eat ducks because I read that they can be necrophiliacs. “If you think about it,” I said, motioning with my fork to my smoked duck in soy-honey jus, “being eaten is really the second worst thing that can happen to them after they die.”
I am great at date conversations. Cancer? Necrophilia? Pick a topic.
What is someone with terminal cancer doing on a dating app? I want what we all want, I guess. I want someone to enjoy spending time with. To tell me I look nice. Only it’s all for a much shorter time. I don’t expect someone to stay with me once I get really sick again. My last relationship made me feel like a burden. In actuality, he was lucky to be with me. I know that now.
I was (and still am) also afraid of something working out and hurting someone else. It feels selfish. But when I like someone, I’m all in. People probably think it’s because of the cancer, but I’ve always been like this, since my very first date at 14 on July 4, 1992, when I sat in a wooded clearing on my first boyfriend’s four-wheeler watching fireworks from nearby SeaWorld.
I had to get home but didn’t want to leave without my first kiss. When we wished on a shooting star, I had the opening I needed. “Do you know what I’ve wanted to do all year?” I said, referring to the crush I’d had on him ever since he entered my freshman English class the first day of ninth grade wearing a Guns ’n’ Roses T-shirt.
“What?” he asked.
“Kiss you,” I said. Then we kissed under the fireworks.
When someone recently texted to see what I wanted to do on our next date, I replied, “I hope this isn’t too forward, but one thing I would like to do is kiss you someplace that isn’t a rainy street corner.” Apparently, I am still the same person I was when I was 14.
Cancer left me with scars, radiation tattoos and a Mediport, but the bad relationship left me with scars I sometimes fail to see. I apologize too profusely, like when I knocked a date’s napkin off the table. “It’s O.K.,” he said, looking at me quizzically. “I’m not going to yell at you.” I realized I had been waiting for him to scold me, like my ex would have.
The guy who made me break some of my rules made me shatter more. I found myself, at his insistence, reluctantly and badly dancing, but laughing the entire time. I’ve held his hand across restaurant tables. I steal kisses from him in public. Sometimes I don’t recognize myself anymore.
I’m so happy and so sad at the same time.
Death isn’t an abstract concept. I live week to week, moment to moment. I live fully, but I have always done that. Since the new treatment, I can even walk around sometimes not thinking about cancer. I agree with my ex: It’s nice. Since that first 1992 date, I just wanted to find someone and feel like that part of my life was settled. But from ages 28 to 40, I just settled. Period.
When my ex kissed me goodbye on the day we broke up, I thought, “This will be the last time a man kisses me.”
It finally feels good to be wrong about something.
When Patricia Cassidy was at her lowest point, she had just been evicted, was overwhelmed with mounting medical bills, and was suffering from a traumatic brain injury that left her emotionally unable to cope with everyday tasks. Then her despair turned to fear as she found herself before a local judge, who mandated that she would have to cede control over her financial and medical affairs to a guardian — an organization that the court would task with managing many components of her life on her behalf.
“I went to the hearing, and it was very, very scary for me,” she recalled in a recent interview. At the time, her therapist and rheumatologist had petitioned the court to place her in a special public guardianship program for people without other means of support from family or friends. But Cassidy, a 59-year-old domestic abuse survivor facing several chronic ailments, feared losing her independence. “I was afraid of guardians,” she said. “I felt that they were going to come in and take over my life and take over everything I had and get rid of it all.”
Five years later, Cassidy said that what she most feared about guardianship — losing control — hasn’t happened. Instead, she’s stayed independent, living in a Brooklyn apartment her case worker helped secure. She now sees her guardianship, administered by the nonprofit advocacy group Vera Institute of Justice, as “just a part of my life.” But her program is part of a small, unconventional support network for extremely vulnerable seniors that aims to safeguard their lives without taking them over. For hundreds of thousands of other seniors, guardianship is an ethical gray zone, operating at the heart of a question that increasingly haunts an aging nation: When am I no longer able to care for myself?
Aging Gaps
Guardianship is one of the most ethically fraught aspects of the elder care system, hinging on the most sensitive questions about personal liberty, medical responsibility and kinship. And it all starts, for better or worse, with a judge’s decree. A court appoints a guardian when a senior is deemed unable to live independently, usually after a hearing process that reviews an individual’s medical needs or physical, intellectual, mental or psychological disabilities, and determines that guardianship is appropriate. Similar to adoption, the guardian is in most cases a relative or friend who petitions for them. But people with fewer resources might end up in the care of a public or private agency, which is tasked with managing issues like medical treatment, financial planning and end-of-life care.
Overall, about 1.5 million people nationwide are in some form of guardianship, more than three-quarters of them involving a relative. Seniors without friends or relatives who are willing to help manage their affairs may enter the care of a private guardian (who is generally arranged by family or friends and compensated directly), if they have the financial resources to do so. Elderly people who don’t have enough funds to finance their own guardians can enter a separate system known as public or community guardianship, provided by a nonprofit or government agency. But as a whole, court-appointed guardianships lack central regulation or monitoring. Advocates fear that as the Baby Boom generation ages and guardianship becomes more widespread, so will the potential for abuse or neglect.
The Vera Institute’s The Guardianship Project (TGP) is trying to get courts and communities to reimagine guardianship, both through research and advocacy and through running its own guardianship model, which now serves about 180 people across New York, including Cassidy. On a national level, TGP’s research on guardianship programs in several states suggests the system is letting many seniors fall through the cracks: Surveys of judges and other court personnel, along with professional guardians, indicate that many courts are overstretched; there is little monitoring of cases, and judges often lack expertise for handling complex cases of seniors with serious health and economic issues. Meanwhile, court-appointed guardians are in many cases attorneys, who might have no expertise in caregiving, and respondents reported a lack of guardians available with skills like social work and nursing.
“Basically, what the whole story is showing is that there’s a population of elderly, disabled and/or poor people that are largely invisible and largely ignored,” said TGP Director Kimberly George.
Meanwhile, public wariness of guardianship is growing: Media reports and government audits have revealed many cases plagued by dysfunctional bureaucracy and a pattern of elder abuse. In professional private guardianships, which often take in seniors who have some assets to pay for services, scandals have erupted in cases of neglect, exploitation or abuse of elderly people. But the poorest seniors are even more vulnerable, since their fate relies completely on the courts and public welfare systems. Poor, socially isolated seniors with complex care needs often find themselves assigned to a public or community guardian that is financed by public funds, but without adequate resources for care and legal services. According to Peter Strauss, an elder law attorney and professor at New York Law School, when funding is arbitrary and inconsistent, guardians, public or private are frustrated by “underfunding, short staff, and then they get overwhelmed with the number of cases that they can’t handle.”
“There’s a gaping hole in the system for folks who don’t have money, but who need help and don’t have anybody [who] can step in to pay their bills, make health care decisions and the like,” said Bernard Krooks, an elder law attorney who handles guardianship cases in New York. Although public guardianship programs could play a critical role for the most marginalized seniors, Krooks told Truthout, “The reality is, there has not been a funding mechanism in New York State to make this happen.”
Keeping Elders at Home
TGP’s model seeks to serve as a different kind of last resort, aiming to provide intensive services for seniors in economic hardship, with no family or friends available to serve as guardians. Funded by New York’s Office of Court Administration and other public and philanthropic funds, TGP serves clients across a range of settings, including residential care facilities, but aims to keep clients in their communities. Each client with a “wraparound team” that includes lawyers and other support staff, with specialists in managing public benefits, finances and housing. About half of the clients live at or below the federal poverty line, and half are people of color. About 60 percent of clients are living in their communities, while others live in residential institutions like nursing homes.
TGP’s multidisciplinary program intends to knit together different strands of the social infrastructure to help people avoid nursing homes and jails. If a client with mental health problems suffers a breakdown and gets arrested, TGP can provide legal representation to secure their release from jail and help connect them to a long-term treatment program that fits their needs. TGP can also support undocumented seniors by helping them obtain medical care and other services while avoiding immigration authorities and federal law that curtails non-citizens’ access to aid.
Until recently, Cassidy hardly fit the stereotype of an “incapacitated” elder. Earlier in her life, she had worked in public relation and museum curation, but over the years, her health deteriorated due to various chronic ailments and domestic abuse. Then in her mid-fifties, she was living on her own — just not very well. Her brain injury often triggered emotional outbursts; basic tasks like a visit to the bank could spiral into an angry breakdown. “I was very overwhelmed, and then therefore not able to even operate on the simplest level,” she said. Cassidy’s vulnerability was aggravated by estrangement from family members. “It was like I became an orphan at 50,” she said.
Her therapist and rheumatologist encouraged her to enter into the guardianship as a way of getting her life under control. A TGP case worker and other staff have helped her sort out her finances and secure a new apartment with a special housing subsidy based on her medical condition. While Cassidy is capable of making her own treatment decisions, her guardian also acts as an interlocutor. A conversation with a doctor can leave her “mentally fatigued,” she adds, but TGP staff “are there with me, and they’re talking to the doctor … then afterwards if they need to, [they] explain it to me five times — the doctor is not going to explain anything to you five times — [so that] I’m sure that it’s a good decision that’s being made.”
TGP works with individuals in residential institutions, but also helps them move back into their communities whenever possible. As the report explains, many clients become “stuck” in the medical system, “languishing needlessly in a hospital or nursing home,” unable to be discharged “because no one will take on the challenges of transitioning him or her back to their homes or to a less-restrictive setting with proper oversight.” Many guardians, George said, particularly those ill-prepared to deal with complex, high-needs clients, might be tempted to place a senior in a nursing home as an “easier” solution — eliminating the need for the guardian to worry about housing, food or managing the client’s bills.
When TGP steps in, the team prepares for a client’s return home by taking care of tasks like settling rent arrears with the landlord, or planning end-of-life care — services that the client would never be able to arrange while bedridden in a crowded rehab center. If a client’s condition deteriorates to the point that some form of institutionalization, such as placement in a nursing home, appears necessary, TGP would work to place them in the least restrictive setting, according to the study, perhaps seeking out a local facility “with staff who speak a client’s primary language and access to religious services and culturally familiar foods.”
Despite its personalized approach, a recent cost-analysis found that TGP’s budget saved its roughly 160 to 180 clients collectively about $3 million in annual Medicaid costs, primarily by avoiding placements in nursing homes.
The Vera Institute’s study suggests other counties and states can use a similar holistic approach to public guardianship. On the policy level, TGP’s study calls for an expansion of public guardianship nationwide — with additional funding, comprehensive monitoring of guardians and service providers, and enhanced regulatory standards, including a commitment to placing people in the least restrictive setting, and a staff-client ratio of 1 to 20 to ensure adequate resources and oversight. Overall, a more human-centered public guardianship program could enable the most vulnerable seniors to live more independently and stay close to their communities.
Safeguarding Elder Rights
Still TGP, with its limited capacity, is not itself a solution for the guardianship crisis. Some disability rights advocates criticize the concept of guardianship in general, viewing it as incompatible with the principle of independent living. They prefer alternative legal arrangements like “supported decision-making,” in which social service providers provide guidance for people on medical and financial decisions while still leaving them legally in charge of their affairs.
Meanwhile, progressive elder law advocates are also gravitating toward alternatives to guardianship that support independence whenever feasible. Alison Herschel, director of Michigan Elder Justice Initiative, says that while guardianship is necessary for some individuals, “we believe there are far too many guardianships and far too many cases that should have been resolved by utilizing less restrictive alternatives.”
The Vera Institute’s study urges court administrators to implement better training so courts can screen cases so people can opt for less restrictive options like supported decision-making. Instead of appointing a guardian for a senior with severe dementia, for example, a judge could arrange for a sibling to gain power of attorney to aid with medical or legal decisions, and provide a home health aide. Even when guardianship is strictly a last resort, the court process can be a framework for meeting a senior’s needs for both care and personal dignity, and providing support without threatening self-determination.
For Cassidy, the TGP guardianship model is not just about getting the right services, but regaining a firm sense of both her abilities and limits. Her guardian hasn’t taken over her life, as she had once feared; instead, it’s a stabilizing presence.
If she ever needs her case worker, she knows who to call. “I carry their card with me all the time.”
This approach to MS care focuses on quality of life and may be beneficial at any stage of the disease.
In recent years, there’s been a movement among many multiple sclerosis (MS) healthcare providers to integrate palliative care into their practices.
When most of us hear the term “palliative care,” if anything comes to mind, we probably think of hospice care — measures taken at the end of life to ease suffering and maximize comfort.
But palliative care is an approach that may be beneficial to anyone who experiences suffering due to a health condition, whether they’re just diagnosed or have lived with it for years. And it’s on the rise among MS care providers.
But as these numbers show, most people with MS still don’t have meaningful access to palliative care, and there are still many misconceptions among both doctors and patients about what palliative care involves and how it applies to MS.
Here’s what palliative care means in the context of MS, when and how it might be helpful, and how you may be able to incorporate it into your treatment plan.
What Is Palliative Care for MS?
Palliative care describes an approach to providing healthcare, rather than any specific type of treatment. While there’s no precise definition, experts agree that it means treating more than just symptoms.
“How do you maintain quality of life? That’s really the crux of what palliative care is,” says Rachael Stacom, an adult nurse practitioner and senior vice president of population health at Independence Care System in New York City. “It’s about comfort and relief of suffering.”
“The way I explain it is looking at ‘disease-centered’ versus ‘person-centered’ care,” says Benzi Kluger, MD, a neuropalliative care specialist at UCHealth University of Colorado Hospital and professor of neurology at the University of Colorado School of Medicine in Aurora.
“In disease-centered care, the primary focus will always be on the patient, meaning a person defined by their illness,” says Dr. Kluger. “Whereas in palliative care, the primary focus is on people who can define their illness” and what’s important to them — including not just the patient, but also family members and any caregivers.
A palliative care approach, Kluger emphasizes, means “helping people with medical symptoms, but also with difficult emotions — things like grief, guilt, loneliness, caregiver burnout.” This approach can be adopted by many different kinds of MS healthcare providers, including neurologists, primary care doctors, and nurses, and it doesn’t require any specialized training in palliative medicine.
In addition to what’s known as primary palliative care — where the approach is a routine part of MS care — there are also specialized palliative care programs for people with advanced MS who need extra services focused on easing a large disease burden and getting optimal caregiver support.
Whether it’s provided as part of normal MS care or as a specialized program, palliative care means that providers and patients are discussing what they hope to accomplish together, and what to expect over time.
“Our goal is to help people anticipate if things are getting worse, and to have open and honest conversations about functional decline,” says Kluger, as opposed to focusing only on medical treatments aimed at slowing disease progression.
When Palliative Care Can Help for MS
Stacom helps oversee a community-based long-term care program for people with physical disabilities, many of whom have MS. But she says that palliative care can help people with MS long before they would sign up for a program like hers.
“For people with a potentially progressive neurologic disease, suffering happens right at the time of diagnosis,” she says. “Some people think that ‘suffering’ is a very strong word, but there’s a significant amount of stress” that comes with MS at all stages.
In this context, palliative care soon after an MS diagnosis means discussing, “What’s going to happen to me? Am I going to wind up in a wheelchair? It’s about allowing space for those conversations to happen, and understanding what that person values,” she says.
Kluger notes that many people are looking for a “road map” as soon as they receive an MS diagnosis. “They don’t want to be feeling their way forward one day at a time in the dark. They want more clarity around their diagnosis, and what to expect” he says.
But even if palliative care isn’t used from the beginning of MS treatment, it can be helpful later on, says Kluger. “As the disease progresses, there may be different triggers for either referral to a specialized palliative care program, or stepping up the palliative care approach.”
Several years into having MS, many people are struggling with pain or fatigue, greater disability or loss of mobility, or planning for a future in which they may need a caregiver, says Kluger. At this point, a palliative care approach can focus on managing symptoms that have grown more complex, and on managing difficult emotions.
When someone has advanced MS, a palliative care approach can focus on increased emotional support, supporting caregivers, and providing home help and other social services. If someone is near the end of life, it may also include hospice care.
At any point in this continuum, someone with MS may benefit from a specialized palliative care program — as described in an article published in October 2015 in Multiple Sclerosis Journal — “if they’re at a point where pain management or fatigue management goes beyond what their primary neurologist feels comfortable with,” says Kluger.
Someone with primary-progressive or secondary-progressive MS may choose to make a specialized palliative care program their main “medical home,” Kluger says, since there may not be much that a neurologist can do for them in terms of traditional disease management.
Kluger has found that at all stages of MS, palliative care can result in better symptom control, especially with pain and fatigue. Often, he says, patients report a better quality of life once they begin a palliative care approach to their care.
And when people with MS start having conversations with their doctor about their future, “they’re empowered to take more control over healthcare decisions” through advanced-care plans, preparing for potential hospitalizations, and eventually arranging end-of-life care in a way they see fit.
Getting Access to Palliative Care for MS
Unfortunately, most people with MS aren’t offered a palliative care approach by their regular healthcare providers. “Neuropalliative care is a relatively new field,” Kluger explains, and even if medical providers are receptive to the idea of palliative care, that doesn’t mean they offer specialized services, like home-based care.
For more people with MS to gain access to palliative care, there will need to be “a grassroots push to move the field towards this,” says Kluger. “I really encourage patients and families to talk to their doctors about it. They really see the need for this, oftentimes more than physicians do.”
Stacom believes that palliative care hasn’t caught on more quickly because, among other reasons, “it requires a power shift, where the person becomes the one leading the care, as opposed to the healthcare provider. And I think that’s a hard thing for us to do” as providers, she says.
But Stacom remains convinced that healthcare will move in the direction of palliative care, for MS and other conditions. “Person-centered care is where healthcare is going now. I think that as healthcare providers, we have a unique position to be a partner, and support people to lead a full life.”
