The threat of COVID-19 has forced many providers to keep high-risk seriously and terminally ill patients isolated to limit the virus’s exposure and spread. As families become disconnected from loved ones approaching the end of life, hospice providers have sought new ways to offer mental health support during the pandemic.
Social isolation during the coronavirus emergency has substantially impacted the hospice population, as well as seniors in general. Research has identified significant links between social isolation and increased risk of early mortality among older and seriously ill patients.
According to a recent report from health insurance marketplace company GoHealth, the pandemic has been driving a mental health decline among isolated aging populations as they practice social distancing from family and friends. In a nationwide study of 1,000 Medicare beneficiaries, 25% percent reported a decline in their mental wellness since the pandemic’s onset, and more than 90% felt lonelier now than before it began.
“Social isolation from friends, families and even their hospice providers visits, has impacted the mental health of hospice patients,” said Shelley Cartwright, executive director of Illinois-based Apex Hospice and Palliative Care. “Social isolation contributes to a decline in mental health. Depression, anxiety, and delirium in those who are terminally ill are frequent and currently most likely under-diagnosed as hospice frontline personnel are not being allowed to make in-person visits as frequently as they normally would as patients, families, hospitals and skilled nursing facilities are in COVID-19 precautions.”
Hospices have struggled to find a balance between technology and the human touch while offering telehealth visits and online virtual support. With families often connected only virtually in the last moments of life, disenfranchised grief has added to concerns of ramping up mental health support.
“Dying is inherently lonely and isolating and made worse when people are actually removed from their loved ones,” said Christopher Kerr, CEO and chief medical officer of Hospice & Palliative Care Buffalo in New York. “It’s ultimately a closing of a life, not just a medical phenomena, and that life is defined by relationships. The pandemic has taken a difficult situation and made it multiple times worse. It’s in moments of crisis and need that we need to connect ourselves to those people that give our life meaning. The opposite happened that when we most needed to be reconnected to those we love, we were removed.”
The sweeping effects of isolation has drawn heightened focus from hospice providers on the need for greater communication and deeper integration of psychiatric care. Research from 2018 projected that the number of seniors with mental health conditions will triple over the next three decades. An estimated 5 to 8 million aging Americans currently suffer from mental illness. Providers have been working on improving hospice access for these patients.
With facilities and hospitals limiting interactions, social isolation has exacerbated mental health concerns as hospices face barriers to reaching patients during the pandemic. One strategy being employed is increased collaboration with referring facilities, psychiatric disciplines and primary physicians as hospice work to support isolated patients and their families.
“We believe that no one should have to face serious illness or death alone,” Carla Davis, CEO of Heart of Hospice, told Hospice News. “Holistic, person-centered care delivered by hospice care teams plays a critical role in protecting and improving the mental health of vulnerable populations who would otherwise be left in isolation. The more we are able to work diligently alongside our facility partners to continue providing quality care, the better equipped we will be to prevent negative mental health outcomes in individuals facing serious mental illnesses.”
As COVID-19 cases and fatalities continue to climb, so does growing concern among hospice providers over the effects of isolation on the quality and experience of end-of-life care.
“Patients, even though imminent, often fight death until they are at peace and have said their good-byes or receive permission from their family to ‘let go,’” Cartwright told Hospice News. “Quality end-of-life experience and death for patients and their families is, and will be, jeopardized with the continued isolation of dying patients from their families.”
At the beginning of April I wrote a piece for the Guardian. If you haven’t read it, the headline pretty much sums it up: “Terminal cancer means I won’t see the other side of lockdown”. Given the pandemic and the announcement of shielding for vulnerable people, I thought I wouldn’t be able to live out my last few months in the way I’d imagined. It seemed like I would be stuck alone, with no light at the end of the tunnel, and without the comfort of friends or family.
Five months on, I’m still here, but much has changed. Thankfully, the experience wasn’t as bleak as you might think. During the first few weeks of lockdown I found I was floating nicely through the time by staying occupied and upbeat. In many ways, you can’t beat the liberation of being able to wake up when you feel like it, having few plans set in stone and being able to do whatever you want with the time you have.
Over the past couple of months, though, my energy levels have dropped, and I have started doing less. I look drastically different. I have lost a lot of weight. A 20-minute coughing fit is now part of my morning routine while my chest tries to settle itself. It’s nothing that some steroids, morphine, an iced drink to settle my throat and time spent dry-heaving in front of a bucket won’t eventually sort out, but it can get really distressing – like an intrinsic panic response.
At points I was really struggling. The loneliness of Covid was making me miserable, and I needed company. But my sister came to the rescue at just the right moment. She moved back into our shared flat at the end of June. It made a huge difference, and I don’t know where I would be without her. After months of isolation, having a family member close by changed everything.
At the same time, out of the blue, I was told I was finally suitable for a drug trial that had been dangled in front of me for more than a year. The oncologists made it very clear that this would not be a “magic bullet”, and the goal would be to extend life by a few months. The aim of the treatment would be to stop the cancer stealing all the nutrients and energy my body needs.
But I was not in the same good shape I had been in at the beginning of other treatments; I was extremely short of breath, unable to exercise and felt lethargic. And after pinning my hopes on the idea of a drug trial for so long, it took just over a week for it to batter me. My days involved moving from my room to the sofa, feeling like I had flu and struggling with mental fog. Almost immediately I realised I just couldn’t do it. Life for me is about living, not just clocking up the years. And this drug made living almost impossible.
I realised I had to finally accept the inevitable: that there was no treatment. I thought this mindset would leave me feeling completely liberated. I was wrong. With nothing left to fight, it really was just a question of waiting. The battle became emotional and mental. It has forced me to reflect.
The first three decades of my life were pretty standard. Well, actually they were awesome, and everything was going pretty perfectly with regards to work, health, relationships and friends. I had plans for the future, too: learn some Spanish, see more of central America, and get a bit more out of it with some volunteering too.
I imagined settling down in my 30s or 40s with kids, a mortgage and so on. Or maybe I wouldn’t. Maybe my friends’ children would call me Uncle Elliot as their parents gathered in the kitchen looking slightly concerned about their single 45-year-old friend about to set off travelling around Mongolia. Either way, growing older with my mates and living my life to the full was always my ambition.
Of course, the second part of this storyline won’t be written now. It’s a shame I don’t get to see what happens. But everybody dies, and there will always be places and experiences missing from anyone’s life – the world has too much beauty and adventure for one person to see. I will miss marriage or children, blossoming careers and lives moving on. But I’m not alone in my life being cut short, and I think my time has been pretty good.
At this point I should say a word to my friends. Being this ill complicates all relationships. The rut I found myself in a few weeks back hasn’t lifted. I’ve definitely been “feeling the victim” a lot more than usual. My acceptance that my time and energy is now limited comes with the knowledge that I won’t be able to catch you all properly to give our relationships the time and appreciation they deserve. I get so many messages from you all, which often exceed the energy I have to reply. Where I am able to see people, I’d just say keeping me company and being positive is helpful. I want fun, laughter, happiness, joy. I think it’s very possible to have this kind of death – there is likely to be a shadow of sadness hanging over proceedings, but for the most part I want everyone relaxed and to be able to feel the love.
Because I know that that moment isn’t too far away. I haven’t asked for a specific prognosis, as I don’t believe there’s much to gain from doing so, but I think it’s a matter of weeks. Medicine has luckily turned this into quite a gentle process. That really does take a lot of the fear away. And I’m hoping impending death now grants me the licence to sound prematurely wise and overly grandiose. Because I’ve had time to think about the things that are really important to me, and I want to share what I’ve discovered.
First, the importance of gratitude. During my worst moments – the shock of cancer diagnosis, the mental lows and debilitating symptoms of chemotherapy – it was difficult to picture any future moments of joy, closeness or love. Even so, at those times I found comfort in remembering what I have: an amazing family, the friends I’ve made and times I’ve shared with them, the privilege of the life I’ve had.
Second, a life, if lived well, is long enough. This can mean different things to different people. It might mean travel. I’ve had the good fortune to be able do this, and can confirm that the world is a wonderful place full of moments of awe and amazement – soak up as much as you can. It may mean staying active, as much as possible – the human body is a wonderful thing. You only appreciate this when it starts to fail you. So when you find yourself slipping into autopilot, catch yourself, and take simple pleasure in movement, if you can. Look after your body because it’s the only one you have, and it’s bloody brilliant. Knowing that my life was going to be cut short has also changed my perspective on ageing. Most people assume they will live into old age. I have come to see growing old as a privilege. Nobody should lament getting one year older, another grey hair or a wrinkle. Instead, be pleased that you’ve made it. If you feel like you haven’t made the most of your last year, try to use your next one better.
Third, it’s important to let yourself be vulnerable and connect to others. We live in a society that prizes capability and independence, two things that cancer often slowly strips away from you. This was naturally a very difficult pill to swallow for a healthy, able late-twentysomething male, but having to allow myself to be vulnerable and accept help has given me the best two years of my life, which was pretty inconceivable at the time of diagnosis. Vulnerability has shown me what phenomenal people my sister and parents are – words can’t do justice to how much they have done for me. The same applies to my friends – what better way is there to spend two years than being surrounded regularly and closely by these people?
Fourth, do something for others. Against the backdrop of Covid-19, Black Lives Matter and the desperate attempts of migrants to cross the Channel, my thoughts really turned to those who have not had my privilege – whether that’s by virtue of socioeconomics, ethnicity or the country I was born in. I always try to remind myself of this.
Fifth, protect the planet – I can’t leave this off because it’s so important. I’ll be gone soon, but humanity will still be faced with the huge challenge of reducing carbon emissions and saving habitats from destruction. In my time here, I’ve been lucky enough to see some natural wonders and understand how precious they are. Hopefully future generations will be able to say the same. But it will take a massive collective effort.
If you asked me what I’d want to leave behind, it would be a new awareness of these things among my friends – and anyone who’ll listen, really. I was astonished by the number of people that responded to my article in April. I now find myself in a position where people are asking me how they can help or what they can do that would make me happy. Apart from the obvious – looking after each other once I’ve gone – I’m going to push for people to give, be that money or time. I’ve already had so many people ask which causes I recommend, and there are loads, but I’d say any that align with the values I’ve sketched out above would have my blessing. Among friends and family there is talk of setting up a small charity in my memory.
Despite some very low times, it’s worth repeating that the period since being diagnosed has been made not just bearable but actually fantastic. I’ve had new experiences that haven’t seemed tainted by cancer – and those experiences were, as always, much better shared. In a situation that is pretty new for most of my loved ones and friends (I am yet to meet anyone I grew up with who has had to deal with cancer or a similar chronic illness at my age), it has been amazing watching them all rise to the challenge. I’m not sure if it’s just that I know a high proportion of amazing people (possible) or if most human beings have this capacity for connecting and recognising what’s truly important (very likely).
After the gut-punch of cancer diagnosis, I’ve really struggled to define a purpose for my own life. I found in time this came naturally. Life is for enjoyment. Make of it what you can.
Knowing what to say to someone who is dying and when to say it can be difficult. The following tips may be useful at any point during a serious illness, but especially when the person is not expected to live more than a few weeks or days.
Tip # 1: Follow the dying person’s lead
It is normal to feel anxious when talking about dying with someone who is nearing end of life, especially if the person is someone you love. Some people handle this anxiety by being clear and blunt. Others say little or nothing about the situation for fear they may appear to be giving up hope. One way or another, we tend to try to protect each other at this difficult time.
If you feel it is urgent to talk about end of life with the person who is dying, you may be impatient with conversation about ordinary things. Humour and laughter may be distracting. On the other hand, if you find talking about dying embarrassing or awkward, you may be relieved that the topic doesn’t come up. In either case, what is most important is what the dying person needs. Ultimately, he or she will choose if, when and with whom to discuss dying. Listen for cues that the person is ready to talk about dying – for example, a passing comment about new symptoms, not being around for an upcoming event, being tired of being sick, or wanting to go home. When you think you hear such a cue, you might ask, “Do you want to say more about that?” or, “I’m not sure I know what you mean.” Then listen and ask more questions to make sure you understand.
Tip #2: If possible, be clear that you know the end is nearing
Some people who know they are dying avoid talking about it right up until the moment of death. It’s important to recognize that this is a valid choice and to respect it. More often, however, people who are dying feel respected and supported by openness and honesty in conversations. They may talk about symptoms such as pain, shortness of breath, or nausea. They may wonder what to expect when death is near. Rather than avoiding these concerns, acknowledge that they must be worrisome. You might say, “Tell me more about what you are experiencing,” or ask, “What do you think is happening?” You could add, “This would be important to discuss with your doctor. Can I help you make a list of questions for the doctor?”
Inviting the person to share information from the health care team can lead to open conversations about the progress of the illness and an opportunity to ask, “What do you now need most from me (from other friends and family members, from the health care team)?” If the person has difficulty answering this question, offer examples of the support you could provide – perhaps being present and listening, running errands for the family, or helping with housework.
When death is near, close friends and family members may want to be present. This is a tender time requiring balance between the needs of the family and the wishes of the person. Ask who the person would like to have visit and how many guests would be appropriate at one time. Keeping his or her wishes front and centre can provide a dying person with a sense of control at a very vulnerable time.
The gathering of family and close friends becomes a quiet signal to all that death may be near. If the person wonders why you or others are present, explain that you want to be with him or her during this time. Follow the person’s lead in talking about what is happening as death approaches. Direct questions deserve simple, direct responses. Use your own words to say something like, “It seems that your journey on this earth is coming to an end.”
Ask the person if there is anyone he or she would like to talk to by phone, internet, or in person. This may include a visit from a religious leader in the person’s faith community, or the spiritual care provider in the hospital or hospice.
If you feel that you still have important things to say, consider the advice of Dr. Ira Byock, a palliative care physician and author of “Four Things That Matter Most.” According to Dr. Byock, the next four tips are things that dying people want to hear from their loved ones.
Tip #3: Deal with regrets by saying, “Please forgive me.”
There is no need to fuss over small injuries or insults. However, when you are preparing to say a final goodbye, you may be bothered by regrets about hurtful words or actions, or ways you may have disappointed the dying person. Deal with your regrets by saying something like, “I’ve been feeling sorry about something that happened between us. I know I had a part in it and I’d like to apologize for it.” After describing the issue or incident in simple terms, say, “Please forgive me.”
Whatever the response, you will know that you have done what you could to address a painful part of your relationship.
Tip #4: Free yourself of hard feelings by saying, “I forgive you.”
If you ask the person for forgiveness, you may be surprised that she or he wants your forgiveness too. Saying, “I forgive you” can clear the way for a deeper sharing of the remaining time. It can also give you a sense of peace following the person’s death.
Due to defensiveness, a lack of understanding, or some other reason, the person may not be ready to acknowledge the deep hurt in your relationship. You can still, however, forgive the person in your mind and heart. This involves letting go of your anger and any wish to punish the person for the hurt you experienced. One woman did this with an older male family member who had abused her as a child by whispering “I forgive you” in his ear shortly before his death. Since he was no longer able to respond, it was not possible to know the effect it had on him. However, for the woman it was an important step in freeing herself from her burden of pain and anger.
Tip #5: Appreciate the person’s legacy by saying, “Thank you.”
Expressing thanks for the positive ways the person has touched your life is a way of letting someone know of his or her lasting significance for you. It contributes to the person’s sense of dignity at the end of life.
Rabbi Harold Kushner writes: “I am convinced that it is not the fear of death, of our lives ending that haunts our sleep so much as the fear… that as far as the world is concerned, we might as well never have lived.” Dr. Harvey Chochinov’s research into dignity in the people who are dying supports this. You can support your loved one’s dignity with a sincere and specific “thank you.” It will let your loved one know that her or his living mattered.
Tip #6: “I love you” – Say it freely; say it often.
It is never too late to say, “I love you” in a relationship. If you are not in the habit of declaring your love for a person you call a “loved one,” take a risk and surprise her or him. It could take your relationship to another level.
Tip #7: Don’t wait until the last minute to say, “Goodbye”
When your loved one is nearing death, it is important to end each conversation in a way that will be okay if it is the last time you speak. Casual goodbyes like “See you around,” or “I’ve got to run, so bye for now,” may leave you wishing you had said something different. Your goodbyes don’t need to be mushy. Just say goodbye in a way that lets the person know that he or she will always be important to you.
If you are leaving for a longer time and unlikely to see the person again, your goodbye may be more emotional. You might acknowledge openly that you don’t know whether you’ll be with each other again. Say what needs to be said. Remind the person again of what he or she means to you. Saying goodbye in a satisfying way can prevent regrets after the person is gone.
Tip #8: Touch talks too.
When you talk with a person who is dying, you touch each other with your words. When words are no longer necessary or possible, you can still connect through touch. Placing your hand gently on the person’s hand, shoulder or head can be a tender way of saying, “I am here. You are not alone.”
Continue to talk to the person even when she or he is no longer able to respond to you. The dying person will sense your presence and hear your voice.
As our mother lay dying, my sister and I sat on either side of her, holding her hand and whispering words of comfort until the hospital machine showed a flat line. Having heard that physicians often witness positive reactions in patients when loved ones speak to them in their final moments, we intuitively thought that perhaps she could hear us. No one knows for sure what happens as we die, but recent information from neuroscientists shows that our intuitions could be right. Knowing what happens when we’re dying can tell us how to console colleagues and loved ones as they lose their battle with COVID-19.
The Last Thing To Go
In the last hours before an expected natural death, many people enter a period of unresponsiveness, during which they no longer respond to their external environment. Anecdotal reports from near-death experiences commonly include stories of the dying person hearing unusual noises or hearing themselves pronounced dead.
In a June 2020 groundbreaking study published in Scientific Reports, neuroscientists provided the first empirical evidence that some people can still hear while in an unresponsive state hours before dying. Using EEG indices, neuroscientists at the University of British Columbia measured the electrical activity in the brain from hospice patients at St. John’s Hospital when they were conscious and when they became unresponsive. A control group of young, healthy participants was also used. The researchers monitored brain responses to tones and found that the auditory systems of the dying patients responded similarly to the young, healthy control groups just hours from the end of life. They concluded that the dying brain responds to sound tones even during an unconscious state and that hearing is the last sense to go in the dying process.
The First Thing to Go
Many people who have had near-death experiences describe a sense of “awe” or “bliss” and a reluctance to come back into their bodies after being revived. I interviewed brain scientist Dr. Jill Bolte Taylor, who described having a strikingly similar awe experience during her stroke which she detailed in her book My Stroke Of Insight.
Jill Bolte Taylor: I was bouncing in and out of the consciousness of my right brain. The left brain had the hemorrhage, growing at an enormous rate over those four hours. By the time I got to the hospital, the hemorrhage was about the size of my fist in my left hemisphere. Over the course of the morning, I drifted into blissful euphoria, the consciousness of my right brain. And then I would come back online and attend to the details to get myself help. It was a movement in and out of being aware of external reality. I was completely conscious through the entire experience, but only at some point could I attend to detail in the external world, recognize that it existed, or even care.
Bryan Robinson: So the fear factor wasn’t there?
Taylor: I was very blessed. I had zero fear. I was there in blissful euphoria in the right brain. Or I was in the left brain, preoccupied with trying to figure out what I needed to do to orchestrate a rescue.
Robinson: How did the stroke change your outlook on life? Or did it?
Taylor: One hundred percent. It shifted me away from believing that I was the center of my world and that “me and mine” is what matters. That whole circuit—the consciousness of me as an individual—went offline. In the absence of the focus of my life being me, I shifted into a consciousness and awareness that I’m a part of a greater humanity. I’m more open, expansive, and flexible to possibilities—as opposed to “here’s what I want and these are the steps I’m going to take to get what I want.” I function inside of a hierarchy of people above me and below me and I’m climbing a ladder. So I shifted away from the linear way of looking at the world and my relationship to it. I live more open to the possibilities of what can be and what is the best match for me.
Robinson: Is it true that your training and professional and personal experience have led you to believe that the right brain or authentic self is the brain hemisphere that endures even at death?
Taylor: The authentic self is the part of us that I firmly believe shows up in the last five minutes of our lives. When we’re on our deathbed, the left brain begins to dissipate. We shift out of all the accumulation and the external world because it’s no longer valuable. What is valuable is who we are as human beings and what we did with our lives to help others. We all face it, and I think that is judgment day. But I don’t think it’s the judgment of something beyond us; it’s the judgment of ourselves. Those of us who are tangled up in the external judgment are not slowing down enough to reflect on the essence of who we are as human beings and what we could be in connection with one another.
Steps You Can Take
It’s important to be supportive, compassionate and understanding in cases where a coworker loses their battle with COVID-19. Don’t hesitate to reach out to other bereaved colleagues, share your concerns and be willing to listen. If you’re an employer, make sure HR personnel are well educated about the process of death and dying. If you are an employee in an organization where COVID-19 deaths haven’t been acknowledged or discussed, speak to someone in authority who can take steps to provide training for all employees. Appropriate information makes sure employees receive emotional support during the loss. Otherwise social isolation can cut employees off from help when they most need it.
Now that hearing is widely thought to be the last sense to go during the dying process and that a blissful experience might replace fear, this information might be helpful to bring comfort to family and friends in their final moments. Perhaps being present with comforting words in the last hours in person or virtually can console the dying as well as loved ones. According to Dr. Elizabeth Blundon, lead researcher in the Scientific Reports experiment, “This is consistent with the trope that hearing is one of the last senses to lose function when a person is dying and lends some credence to the advice that loved ones should keep talking to a dying relative as long as possible.”
As Canada’s population ages, there is increasing demand on our health-care system. A simple blood test may help doctors predict who is at risk of imminent death, according to a study published Monday in the Canadian Medical Association Journal.
Dr. Stig Bojesen and colleagues from the University of Copenhagen studied 108,135 Danish people ages 20 to 100 years who were part of the Copenhagen General Population Study. During the study period, a total of 10,372 people died. The researchers combed through the health records of those who died in search of abnormal blood test results.
They found that the people who died during the study period had lower levels of a white blood cell called a lymphocyte. The researchers crunched the numbers. Compared with those with a normal lymphocyte count, those patients with a low lymphocyte count were 1.6 times more likely to die during the study period.
There are several possible ways in which a low lymphocyte count might be connected to an early demise.
One clue is that the current study found that a low lymphocyte count was associated with an increased risk of death from cancer, cardiovascular disease, respiratory disease, infections and other causes. These are chronic diseases that are common in older patients.
Lymphocytes are part of the immune system and the immune system is necessary to help patients fight off chronic diseases. The researchers speculated that a weak immune system might be one of the reasons why diseases like cancer and respiratory disease are more common the older we get.
Another theory is that a low lymphocyte count might indicate that the patient is frail. We know from other research that frailty can lead to illness and death.
Other tests to predict risk of imminent death
The lymphocyte count is not the only blood test that can help predict the risk of dying.
A number of studies have looked at another simple blood test called C reactive protein or CRP. Elevated levels of CRP are associated with increased risk of imminent death. A recent study found that patients in Japan who come to the emergency department with a heart attack and who have a high CRP level are more likely to die during the ensuing hospital stay.
A 2019 study in the journal Nature Communications identified 14 new biomarkers that can be measured in the bloodstream that could predict the risk of dying within five or 10 years. The study found these tests would likely be more accurate than the conventional risk factors (for example, smoking and heart disease) that doctors use currently.
The researchers say they hope the findings help doctors identify patients at risk of death within two years. Such patients might be followed more closely for signs of life-threatening illnesses and perhaps treated more aggressively. Patients could then be re-tested to see if the lymphocyte count, CRP and other blood tests returned to normal levels as the imminent risk of death is reduced.
Down the road, researchers say they would like to use those abnormal tests and biomarkers to design targeted treatments that might stave off death.
It’s worth keeping in mind that studies like this one confirm what doctors already know. Studies show that doctors are good at identifying patients whose imminent death would not surprise them.
I think patients and their families might be very surprised that their doctors believe them at imminent risk of dying. I believe doctors need to share that information with patients and families to encourage them to live healthier or at very least prepare them for what lies ahead.
When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.
Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.
But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.
It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”
Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.
Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.
“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”
After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.
Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.
But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.
There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.
Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.
In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.
The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.
Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.
The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.
In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.
The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”
On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.
Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.
By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”
On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.
“Absolutely none,” Rosemary says.
“But you know that I would much rather have you live for another year or two,” Mary Beth says.
“Oh God,” her mother says with a grimace.
The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.
In the audience at Iona, the film elicited mixed reactions.
Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”
Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”
Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”
Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”
For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.
But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”
In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.
When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”
That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”
By then, the bed is empty, the blue satin pillow still on it.