A woman receives hospital-level care from a nurse in her home. More Americans are opting to spend their final days at home instead of in a hospital, according to a new study.
The American way of dying seems to have become less frantic, desperate and expensive.
That’s the upshot of a new study that finds that seniors insured by Medicare who died in 2015 were less likely to do so in a hospital and more likely to pass away in a home or other community setting than those who died in 2000.
The new research also showed that the proportion of American seniors who were admitted to the intensive care unit during their final month of life has stabilized after rising between 2000 and 2009. By 2015, 29% of dying patients insured by Medicare spent part of their final month of life in the ICU.
The study also chronicled a slight decline in the proportion of Medicare patients who spent time on a ventilator during their final days and whose last three days of life were affected by a transfer from one institution to another — say, from a nursing home to the hospital.
The findings were published this week in the Journal of the American Medical Assn. They were based on an analysis of records from 1,361,870 Medicare fee-for-service enrollees and 871,845 Medicare Advantage enrollees who died between 2000 and 2015. Their average age at their time of death was 82.
In all, just short of 20% of Medicare-insured patients who died in 2015 did so in an acute-care hospital, down from 32.6% who did so in 2000. Some 40% of these patients died in a home, hospice, assisted living facility or other community setting in 2015 — up from about 31% in 2000.
Those shifts took place during a period of sweeping changes in U.S. medical care.
As the 21st century got underway, palliative care gained a foothold in U.S. hospitals. This new medical specialty focused on improving the quality of life for very ill patients.
Then, with the adoption of the Affordable Care Act in 2010, hospitals adjusted to new rules aimed at improving the quality of care and reducing expensive patient readmissions.
A woman holds the hand of her husband, who is in hospice care. More Americans are opting to spend their final days outside of a hospital setting, according to a new study.
Meanwhile, doctors and hospitals began a vigorous reassessment of the way they cared for patients who were approaching the end of their lives. Studies chronicled many terminal patients’ tumultuous final days of treatments that were invasive, painful and futile. Other research toted up the traumatic stress experienced by surviving family members.
Physicians began to ask themselves and their patients whether their profession’s dedication to such “heroic measures” were saving patients’ lives — or poisoning their deaths.
In 2014, that debate culminated in a report by the National Institute of Medicine that defined a “good death” as one that is “free from avoidable distress and suffering for patients, families and caregivers” and “in general accordance with patients’ and families’ wishes.”
A patient’s death in the intensive care unit “is seldom viewed as a good death,” concluded the report, issued by the National Academies of Sciences, Engineering, and Medicine.
“There was a greater collective awareness that not all medical interventions are equally beneficial, and that the potential harms of some needed to be weighed,” said Dr. Diane E. Meier, a geriatrician and palliative care specialist who directs the Center to Advance Palliative Care and was not involved in the new research.
A greater focus on the comfort and values of seriously ill patients went hand in hand with the widespread adoption of palliative care teams in hospitals across the United States. These teams included specialists in pain management, mental health, legal and social work, and pastoral care, and they’ve been key in helping clarify what kind of lives — and deaths — patients with serious illnesses want. Then they help those patients and their families plan accordingly.
In 2000, fewer than 20% of hospitals with more than 50 beds had a palliative care team in place. By 2015, close to 70% of such hospitals did, according to a registry maintained by the Center to Advance Palliative Care.
“It’s impossible to say what’s at work here,” said Meier, who underscored that the new study shows a broad trend but does not delineate contributing factors. The changes came against the backdrop of significant shifts in insurance, institutions and professional practices, she said.
The analysis also yielded a wealth of small details about changing practices in end-of-life care.
For example, the study found that the use of hospice services by dying patients increased from 21.6% in 2000 to over 50% in 2015. And the proportion of patients in the study who died after getting only brief hospice services — for three days or fewer — dropped slightly, from 9.8% in 2009 to 7.7% in 2015.
The share of patients who had three or more hospitalizations in their last 90 days of life declined from 11.4% in 2009 to 7.1% in 2015. And the share of patients who spent part of their final four days on a ventilator fell from 3.1% in 2000 to between 2.5% and 2.7% by 2015.
At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.
BY Jessica Skarzynski
At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.
In a study presented at the American Society for Clinical Oncology (ASCO) Annual Meeting, Sara Douglas, Ph.D., RN, and her colleagues evaluated the discordance between the goals of both patients and physicians, and how it can negatively impact quality end-of-life care.
The idea for this study was born from the researchers’ initial work examining physician and patient goals of care at end of life in the intensive care unit (ICU). “We found that there was a fair amount of disconnect between what the physicians’ goals were and the families’ goals were,” Douglas, who was lead author on the study, said in an interview with CURE.
However, she added that their initial research was missing the patient voice. “Because the patients couldn’t speak for themselves, we had their surrogate decision makers – which was usually a family member – determine what they thought the patient wanted,” Douglas added. “We didn’t know, really, what the patient was thinking.”
So, Douglas and colleagues took this basic framework and applied it to a situation where they had the greatest opportunity to understand both the patient and physician point of view consistently over time.
In a longitudinal design study that ran from January 2015 to July 2017, 378 patients with stage 4 gastrointestinal (66 percent) or lung (34 percent) cancers and their oncologists were surveyed at enrollment and again every three months for the next 15 months, or until the patient died.
Using a visual analog scale where one end indicated survival and length of life as most important (100 points) and the opposite end indicated that quality of life and comfort were most important (0 points), participants were asked to move a toggle along the continuum to represent their goals at each specific point in time. Discordance between patient and physician scores was defined as an absolute difference of more than 40.
Neither group could see the other’s responses, but Douglas noted the disparities were striking. “We had some scores where the difference was 92 points – one response was 100 and the other was 8. We had a lot of variability in terms of physician and patient responses,” she added.
In total, 168 patients (44 percent) died after an average of 6.5 months after enrollment; however, their results were still presented. At the last assessment prior to death, 32 percent of the patients and their physicians reported having discordant goals. Of these cases, 60 percent of patients had more survival-focused goals compared with 40 percent of doctors. Lastly, 77 percent of pairs with discord at enrollment still had discord at the last assessment before death.
When the physicians were asked what they believed patients’ goals of care were, there was only a 27 percent discord in what the patients’ actual goals were. “Physicians, when asked what their understanding is of what the patient wants, assume it’s the same thing the physicians want themselves,” Douglas said. “This is called false consensus bias, (meaning) I assume you agree with me unless there’s evidence to the contrary.”
Douglas did note that extreme discordance was not the norm. “If you think about it, 27 percent of the dyads were in sharp disagreement, but that means that 73 percent were in agreement to some degree,” she added.
Douglas acknowledged that these findings highlight the need for patients and their physicians to have clear discussions and come to a better understanding, so that patients will receive end-of-life care that is consistent with what they want. But if communication is key, where should it start?
Research has shown that patients often expect physicians to bring up these topics. But due to many factors, including the physician’s comfort levels when dealing with these topics, these discussions may not take place. So, Douglas and her team have begun a new study where they share the information and record the discussion to better understand why each party feels the way they do, and then see if either patient or physician changes their goals.
Ideally, they hope to create a model that empowers patients to take a more involved role in starting these discussions. “If patients can at least have access to […] what their physicians are thinking and why, they can at least make an informed decision,” Douglas said.
“That decision may be that they choose to disregard that information, but at least they’re making an informed decision.”
While nearly all physicians say end-of-life conversations are important, many report lacking the training to have such conversations, according to a brief report published online May 23 in the Journal of the American Geriatrics Society.
Terry Fulmer, Ph.D., from the John A. Hartford Foundation in New York City, and colleagues conducted a 37-item telephone survey to measure attitudes and perceptions of barriers and facilitators to advance care planning among 736 physicians (primary care specialists; pulmonology, cardiology, oncology subspecialists) regularly seeing patients aged ≥65 years.
The researchers found that 99 percent of respondents agreed that it is important to have end-of-life conversations, yet only 29 percent reported that they have received formal training for such conversations. Younger physicians and those caring for a racially and ethnically diverse population were more likely to have had training. The strongest motivating factors in having advance care planning conversations were patient values and preferences. The vast majority of respondents (95 percent) reported supporting a new Medicare fee-for-service benefit reimbursing advance care planning. Time was the biggest barrier reported to advance care planning, as well as not wanting a patient to give up hope and feeling uncomfortable.
“Given the gap between what people want at the end of life and the care they receive, we need to build on available training tools and embed them systematically into practice,” the authors write. “Addressing clinician barriers to advance care planning to meet the needs of their older patients and families requires the integration of existing, proven tools into a three-pronged strategy that includes education and training, formal systems, and reimbursement for these critical conversations.”
[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.
Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?
The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.
Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.
Is There a Right to a Good Death?
In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.
When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.
A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.
Sarah Simons
This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.
A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.
What Exactly is CPR?
Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.
CPR is traumatic, undignified and usually unsuccessful in patients of all ages.
Sarah Simons
Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.
CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.
Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”
The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.
Making the Right Choice For The Patient
Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible.
Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.
Sarah Simons
Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.
As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.
That sounds judgmental, but it’s more akin to wishful thinking.
While death is a certainty, it’s rarely a goal, so we tend to resist, to worry, to grasp at new treatments or old beliefs.
But the emerging death doula movement offers another option: We can’t change the destination, but we can improve the journey.
The term doula is more linked to childbirth, describing someone present during labor to help a mother feel safe and comfortable. There’s no medical role; doulas are companions and listeners. They attend.
End-of-life doulas, also called death doulas or death midwives, similarly are attuned to a dying person’s emotional needs.
“It’s about filling a gap that the system doesn’t acknowledge,” said Christy Marek, an end-of-life doula from Lakeville. “The system is designed to tend the body. But when you get into the lonely feelings, the mess of real life, the expectations and beliefs around dying — those things don’t fit into the existing system.”
In some ways, death doulas signal a return to earlier times, when ailing parents lived with children, when life-extending options were fewer.
“Death was more of a ritual, really laboring with someone as they were dying,” said Jeri Glatter, vice president of the International End of Life Doula Association (INELDA) in New Jersey.
Family and friends “felt a sense of acceptance and completion and a knowledge that they had fully honored someone,” she said. “It’s the most loving act that they could do.”
Over time, though, “we became a very medicated society — and thank God for that. I don’t want to diminish that,” Glatter said. But medical options can create a sense of disconnect with our inevitable mortality. When those options are exhausted, “we say we’ll house them, make sure they have medication and have a bed that goes up and down.
“But people are saying, ‘I don’t feel OK about this.’ ”
Marek is the first end-of-life doula in Minnesota certified by INELDA, credited with creating the first death doula program for hospitals and hospices in 2003. It offered its first public training in 2015; last year, 700 people attended 18 sessions. Several other groups in Minnesota and elsewhere offer training and doula directories.
Glatter said the trend has roots with those who used birth doulas in the 1980s.
“These people now are burying their parents. Just as with birth, as we labor into the world fully engaged in that process, they’re saying, ‘I want to be fully engaged in this process.’ Doulas are the bookends of life.”
How can we do this together?
What does it mean to be fully engaged? Whatever the dying person wants it to mean.
“Is the person having their own experience, instead of trying to meet the expectations of the family?” Marek asked. “I’m there to create a space for the person who is dying to ask, ‘How can we do this together?’ ”
One woman, for example, asked Marek to tell everyone that she wanted acknowledgment — a greeting — each time someone entered her room, “even though it may look like she’s sleeping.”
Marek added, “I have no agenda other than reflecting to that person what they are saying, what they are feeling. I can give directions to family and friends, which is a comfort to the dying person because then people around them know what to do — and they feel listened to.”
As part of a new field, doulas occupy a niche among doctors, family, hospice and other factors. Sometimes, doulas fill practical needs, gathering paperwork or helping with funeral plans, particularly if relatives are distant, either geographically or emotionally.
More often, though, their roles are more personal: creating a vigil environment, writing letters to loved ones, helping family members recognize the signs of dying such as a change in breath and, finally, helping survivors deal with their loss.
Glatter said that doctors or hospital personnel sometimes worry that a doula will infringe upon medical decisions. But doulas have no medical role, and may even be able to provide information that doesn’t come up in medical conversations, “such as, ‘Do you know there’s a son with a restraining order?’ ”
Doulas’ lack of medical standing also enables consistency. Doctors may change. Hospice care may be suspended. “But a doula provides a continuity of care no matter what treatments are being done or not,” Marek said.
Dying as a creative process
Marek, 47, appears to wear not a speck of makeup. The physical transparency mirrors her comfort with the emotions that dying can expose. But it took her years to reach this point.
With a degree in child psychology, she intended to work with youngsters. Then she met a child life specialist, a field of which she’d never heard, describing someone who works with children with acute, often fatal, illnesses.
“It was like a lightning bolt went through me,” she said. “I knew that someday I would work with people who are dying. And it scared the pants off me!”
She went on to do other work, in the course of which she explored yoga, shamanism, writing, painting and more. She studied to become an anam cara, from pre-Christian Celtic spirituality that translates as “soul friend.”
Every few years, the idea of working with dying people surfaced, but never took hold. Then, five years ago, she learned about applying doula principles to the dying process. This time, the idea came cast as “the creative process at the end of your life,” and her path was clear.
“I feel like this has been following me my whole life,” Marek said. She took the training through INELDA, which includes vigil planning, working with the survivors, and self-care for doulas themselves. She founded a business, Tending Life at the Threshold.
“As doulas, we’re trying to normalize the experience of death,” Marek said.
She recalled one woman who said that her mother would love it if Marek would read the book of Psalms or a Hail Mary. “And I told her, ‘I can certainly do that. But it would be more meaningful if you did.’ ”
Once family members and friends learn that it’s OK to “lean into the pain,” she said, they may find a sense of comfort and ease with dying that, in turn, proves a gift to their loved one.
Another support system
Karen Axeen had been sick for what seemed like forever, after years of breast cancer and ovarian cancer and other chronic illnesses.
After spending almost all of 2016 in the hospital, she decided to enter hospice care. She also decided that she wanted a doula at her side.
“She kind of fell into the idea, talking with the hospital social workers,” said her daughter, Laura Fennell, who lives in Marshall, Minn. “I don’t live close by, so I think it was really helpful for her.”
Working with Marek, Axeen developed what’s often called a legacy project. In this case, she wrote several letters to each of her six grandchildren, to be read as they grow older.
“She wrote letters to be read on their 16th and 18th birthdays, on their wedding days, on the first day they have kids of their own,” Fennell said.
“I think I probably would have been lost after my mom had passed away, but Christy had everything organized,” she added. “It’s definitely a great service for those who don’t have family in the area.”
End-of-life doulas “are another support system,” Fennell said. “It was important for Mom to be able to get to know someone closely and have them walk her through the final process of life.”
Axeen died on Sept. 23, 2017, at age 57.
‘We know how to die’
Some death doulas volunteer with hospices or churches. Others work in hospitals, while others set up private practices.
Glatter mentioned a California prison where inmates with life sentences became end-of-life doulas “because they wanted to be able to care for their own,” she said. “They’re really an extraordinary group of men who wanted to pay their debt to society by helping other inmates as they die.”
An article in Money magazine included death doulas among “seven new jobs that reflect what’s important in 2017.” Also listed, compost collectors and vegan butchers.
The death doula trend reflects gradually more open attitudes toward death. Surveys show that 80 percent of Americans would prefer to die at home if possible, but few are able to. Yet the landscape slowly is changing. Hospital deaths slowly declined from 2000 to 2010. In that time, deaths in the home grew from 23 percent to 27 percent. Deaths in nursing homes held steady at about 20 percent.
The Centers for Disease Control suggested that the shifts reflect more use of hospice care. As the dying process becomes, for some, more grounded in the home, end-of-life doulas may become more familiar and, in Marek’s vision, help make death a natural part of life.
She reached that vision, in part, during an outdoor meditation project she began in 2014. For 1,000 days, she meditated for 20 minutes outdoors, no matter the weather. (It’s on Instagram as wonderofallthings.)
“Sometimes I’d be thinking, ‘This is awful. But that’s OK,’ ” she said. “It helped me develop a tolerance for whatever is happening, and to stay close to the fact that none of us is immune to the cycles of nature, including death.
“If you can sit when it’s uncomfortable — to be able to sit in the unknown — that’s huge.”
While family members may not be at peace with someone’s death, she added, they can be at ease with it as a natural outcome of life.
“One thing I believe firmly is that we know how to do this,” she said. “We know how to die, like every creature of nature does. We just need to get out of our own way.”
[L]ocal medical schools are in the process of a curricula revamp that will train students to focus more on end-of-life care, making Massachusetts the first in the nation to reach a statewide commitment to quality of life.
“Massachusetts is really leading the way on this. It led the way on universal health care, on gay marriage, and it’s leading the way on this, too,” said Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital and author of the book “Being Mortal.” “I’ve learned the question is not do you fight or do you give up. The question really is, what are we fighting for? What’s the quality of life we can fight for?”
The Massachusetts Coalition for Serious Illness Care has orchestrated the effort among four local institutions: Harvard Medical School, Boston University School of Medicine, Tufts University School of Medicine and University of Massachusetts Medical School.
Gawande, co-founder of the coalition, said Massachusetts has the opportunity to create a national model for medical schools across the country.
It’s an important shift, he said, from the fix-it mentality that many doctors are taught to possess. He said the extent of his end-of-life training amounted to an hour of discussion in the first two years of medical school.
“You go in focusing on wanting to be a hero and fix things,” Gawande said. “Teaching people in med school what it means to be an effective clinician for giving people cutting-edge care for quality of life — as opposed to quantity of life — is a neglected skill.”
The medical schools are taking inventory of what skills they’re already teaching and will add various training methods including role play patient actors. UMass Medical School’s simulation lab is already starting to be used for skills that extend beyond sewing and suturing, said Dr. Jennifer Reidy, the school’s chief of palliative care.
Medical students will be required to have conversations with people about breaking difficult news, prognosis and end-of-life planning.
“We’re using it to teach complex communication procedures,” Reidy said. “We want to ensure our newest clinicians are well-situated to practice these skills.”
The changes will be implemented in full by the beginning of next academic year, Reidy said.
Tiffany Chen, a third-year medical student at UMass, said the topic of death is still taboo even in the medical field.
“It’s really hard to talk about death, and it’s hard to conceptualize,” Chen said. “But death is not a failure and there’s always something you can do for a patient. If we can infiltrate the medical field with that mindset, we could do a lot of good.”
The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.
Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.
Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”
Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.
In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.
“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”
Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.
Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.
For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.
But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.
Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.
Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.
For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.
“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”
But after discovering Hospice of the Piedmont, that process became much easier.
“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”
For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.
Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.
“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”
Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.
“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”
The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”
