Prospective medical school students can use volunteer experiences to learn how to care compassionately for dying patients.
Most prospective medical school students set out to become physicians because they want to heal the sick, often forgetting that patients, young and old, sometimes die.
Death is a very real – and natural – part of medicine that you will not only face but also will need to learn how to handle. Before you start medical school, consider how you might care compassionately for a dying patient and how you will cope with the loss.
Some physicians – although very few in my experience – look at death as defeat and cope by emotionally running away from dying patients. For example, in the inpatient setting, they may visit the patient less often or avoid contact altogether.
In the outpatient setting, they might recommend a longer time between visits or, rather than suggest a follow-up appointment, wait for the patient to request one. This coping strategy makes patients feel abandoned.
Other physicians – again, very few – cope by behaving callously or indifferently. Subconsciously, they may be trying to avoid emotional involvement, but their behavior leaves their patients and families feeling hurt and disappointed.
Most physicians find healthy strategies to support their dying patients. These same strategies help physicians keep themselves emotionally healthy, too.
As a future medical student, it’s vital that you prepare yourself to compassionately face death and dying and the complex emotions that follow. One way to do this is by volunteering in a hospice facility or nursing home and honing these six skills.
1. Be authentic: As a volunteer, introduce yourself and express your hope that someday you wish to become a physician. Let patients know you are there to learn more about their experiences.
Ask patients about how they grew up or what they were thinking about at your age. Ask about their work or career – a generally safe place emotionally – and where they have lived or about their family.
Be sure to make eye contact and watch your body language. You’ll use these skills when you’re a physician to develop trust and open communication with patients.
2. Listen with purpose: Practice your active listening skills so that on future visits you can ask patients more about previous conversations.
By bringing up something from a past visit, you will show that you remembered what they told you and that they matter to you as a person. Active listening is another skill you will use throughout your medical career.
3. Allow patients to talk about death: Everyone faces death differently; some people want to talk about it, while others prefer to reflect on their life and accomplishments.
Whether now as a volunteer or later as a future physician, let patients talk about death as they need to. Don’t shut down the conversation by saying, “Everything will be all right.” Instead, ask them to tell you more. Listen to all they have to say, whether it’s about their health, fears or fond memories.
4. Visit or connect consistently: A good physician builds rapport over time, and you can develop this skill through your volunteer position. During extended time between visits, call or drop the patient a note.
This is a good habit to develop so that when you are a physician, your patients – particularly those who are dying – will feel supported. At the end of each visit, thank the patient. You won’t know at the time if it will be your last opportunity to visit, so treasure each interaction.
5. Seek support: Myriad scholarly articles and books are available to help physicians – and all people – accept that death is an inevitable part of life and that grieving is normal and encouraged. For instance, attending funerals help some people grieve, while others seek solace from support groups or counseling.
Social workers also deal with death and dying regularly and can give you advice about how they cope and prevent burnout. Make the social work team part of your professional network. Their support and advice will help you cope as a physician, especially when you lose a patient who had a particular influence on you.
6. Allow yourself to grieve: Over the course of your relationships with patients who are dying, you will learn a great deal about your capacity to care for others. It will likely hurt when patients die.
Remember that it’s important to grieve, and keep in mind that everyone grieves differently. Give yourself the room to process your emotions and to discover the coping mechanism that’s right for you.
Over time, you will gain some insight about your ability to cope. Physicians often cope by speaking confidentially with colleagues and expressing sadness and other emotions in a journal. After omitting a patient’s protected health information, some physicians publish their writings to help themselves and others who are grieving.
Many medical schools also teach students to reflect about their emotions and write them down. Writing and seeing the words help the healing process.
As a future medical student, embrace the opportunity to get to know someone who is dying. It will allow you to reflect on how you may feel when a future patient dies and learn to create a meaningful bond with the people you touch now and in the future.
Complete Article HERE!
by Bert Gambini
A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.
Most states in the U.S. have programs that allow terminally ill patients to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures health care providers, including EMS providers, should take near the end of a patient’s life.
Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.
Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.
Through a series of interviews with five different emergency medical service agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.
“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”
That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.
She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.
But questions remained.
“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.
There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.
Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.
The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual disabilities engage in end-of-life discussions.
Since January 2016, Medicare pays for patients to have advance care planning conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with intellectual disabilities have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.
“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”
Complete Article HERE!
By Bridey Heing
The question of what happens when we die—in a literal rather than philosophical sense—haunts many of us. But few have made it the focus of their life’s work like Caitlin Doughty. An advocate for shifting the conversation about the “right” way to care for deceased bodies, Doughty owns a Los Angeles funeral home and organizes events where people discuss death with a range of approaches. Her latest book, From Here to Eternity, explores death culture around the world, illuminating the many ways to hold a funerals.
Doughty describes herself as having always been interested in death, but it was after studying Medieval History that she wanted to learn in a more hands-on setting. “When I graduated from college,” she says in an interview with Paste, “I decided that I wanted to see what real dead bodies look like and how they were being taken care of and disposed of.” She found an opportunity when she got a job at a crematory, where she immediately felt a connection to the work. “It’s hard to describe to people, but really from the second that I started working at the crematory, it was like, ‘Oh, this is what I’m supposed to be doing.’”
Doughty immediately recognized that the knowledge gap between the funeral industry and the general public is significant; she says no one quite knows what happens with a body after death. So not only did she want to learn more about the American way of death, but she wanted to talk about it with others. Her first book, Smoke Gets in Your Eyes, chronicled her journey into the funeral industry. And if she needed any indication that people were willing to listen, the fact that the book was a bestseller suggests that there is a desire to learn more about what takes place behind the scenes.
Doughty received a similar response a few years earlier when she founded the Order of the Good Death, an organization dedicated to expanding our understanding of and comfort with death. The organization established a space where everyone from academics to creatives could discuss death. “I was trying to create a community around death, and over the years it has become a resource. It’s hopefully a place where the culture of silence around death can, even just for a moment, be broken.”
Breaking the culture of silence around death is the heart of From Here to Eternity. Each chapter focuses on one or two cultures that handle death in unique ways. In Indonesia, Doughty watched as mummies were taken out of special house-slash-tombs to be feted. In Japan, she visited hotels where families spent time with loved ones’ corpses before cremation. In Colorado, she witnessed an open-air pyre where the community came together to honor the dead. In Bolivia, she made offerings to skulls called natitas, which were dressed up and paraded in the streets during the annual festival in their honor.
Doughty’s mission with her new book is to start a conversation about death in other cultures in a way that says something about U.S. funeral culture, and she wants to communicate the significance of rituals other than our own to combat a lack of cultural relativism.
“I see over and over again people talk about American death tradition, like embalming and burial in a big vault underground, and not liking that at all,” Doughty says. “But at the same time, whenever they heard about something that goes on overseas, they’d go, ‘Ugh, that’s so disrespectful and morbid.”
From Here to Eternity humanizes rituals that might otherwise seem unfathomable. “Even the things that are so out there by our standards feels so normal when you’re there. I wanted to get across that just because it’s not what you do doesn’t mean it’s weird or morbid or should be disparaged.”
Doughty’s text about the way families interact with their deceased loved ones is incredibly moving. But she doesn’t lose sight of her own role as an outsider observing a deeply intimate ritual, and she even talks about the ways in which death tourism has become an issue in countries with well known ways of handling their dead.
“You go into it thinking, ‘I have the best intentions, I’ve spent my life researching these things.’ But the family doesn’t know that,” she says. Doughty relied on local contacts and close friends, who could make sure she didn’t overstep while families were grieving. “The places I chose to go were places I had some in, whether that was a local guide or a person I know who travels all the time to these places.”
While the book has an international focus, the message is clearly one of a domestic nature. The shadow of how the United States handles death is always present, and Doughty dips in and out of her travel narratives to contrast what she sees with what she experiences in her own work. She also questions the very foundations on which the United States has built its funeral industry, including supposed health concerns that have led to profit-driven models of post-death care that many funeral homes require.
Doughty ultimately wants to change the way we talk about and experience death for a simple reason: she regularly hears about how frustrated Americans have been with their own experiences grieving loved ones. “This is my country and my own industry that I work in and own a funeral home in, and it doesn’t seem to be working for a lot of people,” she says. “If I didn’t hear that again and again, I wouldn’t keep doing this work.”
Doughty doesn’t advocate anywhere in the book for one system over another, but she does reveal that the U.S. system as it exists is deeply flawed. Her goal is to explore better ways to handle death, and in this, From Here to Eternity succeeds.
Complete Article HERE!
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
As organisms that fight for survival, just as other organisms on the plant, a fear of death is built into our psyche. We write about it, we sing about, and Woody Allen obsesses about it. Throughout the ages, civilizations have created various deities to try to explain our origin, our purpose, and our fates when our bodies fail us. As science has evolved, we have learned to worship technology as a new deity that may protect us from aging and our ultimate demise. Despite our growing medical technology, life still has a 100-percent mortality rate. Someday, you are going to die.
Our medical technology sometimes gives us false hope. We pray to the false gods of machines and newer and more expensive pharmaceuticals to stay our execution, often without the thinking about the financial and emotional costs. As a society, we need to be good stewards of resources, as these resources are not infinite. Money that is spent on futile health care could be better used for other things such as alleviating homelessness, treatment for substance use disorder, or perhaps ensuring that every American has a cell phone. What is often overlooked in this discussion is the burden of suffering.
When you are admitted to the hospital, you will often be asked your wishes as far as resuscitation. If you are a 46- year-old otherwise healthy person who is having a heart attack, the answer will almost always be to do everything possible to resuscitate you. If you are 102 years old with dementia and a massive stroke, the answer will probably be to allow natural death. In fact, if I’m the doctor for the latter, I would not ask the family their wishes; I would tell them that it would be medically futile to attempt resuscitation and would only prolong suffering.
In discussing the end of life, the trend over many decades has been toward less paternalism and more autonomy. We encourage living wills and we try to discuss these issues with patients ahead of time. When I was a medical student in an academic university, the discussion was never IF we were going to resuscitate, but what fluids, what size endotracheal tube, and how many medical students could practice procedures before we called the code. Now we are trying more to give the patients and families their opportunity to decide within the setting of their values.
One of the ethical dilemmas in medicine is the balance between autonomy and beneficence. In the United States, we greatly value autonomy in medical decision-making; your ability to make your own decisions about your life, including health care. Built into Western medicine is the idea of informed consent. I offer you medical options and you can choose to take a medication, undergo a procedure, or try your favorite essential oil. I inform you of the options, and make recommendations, but autonomy says that you get to decide if you prefer lavender or vanilla.
Beneficence is a stronger force in other cultures, but it is also ingrained in our medical culture. Beneficence is essentially when your clinician is deciding what is best for you. The opposite is maleficence, the act of committing harm, which every physician swears an oath not to do. If there was no beneficence in medicine, you could walk into your neighborhood pharmacy and get OxyContin, Adderall, Xanax, and a side of cocaine by request. I practice beneficence over autonomy regularly by telling patients that certain controlled substances are not in their best interest, or declining a patient’s request for an unnecessary CT scan because the risks of radiation outweigh potential benefits. It is also beneficence when I place a patient on a psychiatric hold because I feel that they are in imminent danger of harming themselves.
When discussing end of life care with patients, health-care professionals must balance these two ideas. Many providers are uncomfortable with these discussions, and often begin and end the discussion with, “Do you want everything done?”
Well, who doesn’t want everything done? The logical converse is putting someone in a corner to be ignored as they gasp for breath. In reality, there is plenty that can be done at the end of life. Medical school focuses on the diagnosis and treatment of disease, but often falls short in discussions of palliation of symptoms. I do not like the term “do not resuscitate (DNR)” as it implies that we are withholding care. In fact, what we are doing is changing to focus of care to allow natural death and palliation of pain and anxiety. We have many treatments available for symptoms at the end of life and I minimize the suffering of my dying patients.
What happens when the family and the provider are not on the same page? Just like most areas of human interaction, the key is communication. I was the chair of the bioethics committee at a community hospital for two years and the vast majority of ethics consultations were regarding end of life care. In almost all of these cases, the issue was resolved by compassionate, open communication. Physicians are often frustrated by patients and families who have unrealistic expectations. Unfortunately, we also put the burden on families in the name of autonomy. I have seen many families struggle with the decision of whether or not to attempt resuscitation for a loved one, and it is evident that they fear the guilt of making the wrong decision. I often then put that burden on myself and give them an opportunity to object by saying things such as, “resuscitation is unlikely to provide a meaningful recovery and likely to cause suffering so I recommend if she stops breathing or her heart stops that we allow a natural death.”
This often assuages the family’s guilt as I advise them what I think is best.
Since death is inevitable, the decision is really the balance between extending quality life and suffering. If I extend your life, but during that time you are unable to communicate and have to endure painful procedures, I have not really helped you. However, if those painful procedures will then return you to a life that you consider meaningful, I have done some good. Although I cannot see the future, I can predict the likelihood of a good outcome based on your prior health, function, and the nature of your current illness. All too often I see someone with severe dementia who is bed-bound with a feeding tube undergoing painful procedures that will inevitably only prolong suffering. Ethically, I think that is doing harm.
According to medical ethics, clinicians should not offer futile care. I see it happen in the name of autonomy or misguided fears of litigation. I do not offer feeding tubes to patients with dementia who stop eating because there is ample evidence that it does not prolong life and it does increase suffering. Those of us in healthcare need to remember that we are the experts and we should first do no harm. Those of you who are involved in these decisions need to ask your medical providers these difficult questions. Ask your physician, “If this were your mother, what would you do?”
Most of the deaths I see are predictable. As we age and deal with illness, we should not fear death, but plan for it. Death is a natural part of life, and will occur whether we are ready to accept it or not. Several studies have demonstrated that physicians are more likely to die at home and less likely to have aggressive surgical procedures at the end of life. Our patients should have the same consideration and be allowed a dignified death.
Speak with your family about your wishes and their wishes. If you have a family member with a serious chronic illness, don’t wait until you’re in the emergency department and frightened and someone is asking you if they should “do everything”.
We will all die some day and if we are prepared, we may be able to die well.
Complete Article HERE!
By THERESA SULLIVAN BARGER
“We’re not treating this palliatively,” she remembers him saying. “It’s just to kill the cancer. We’re giving you everything to fight it with everything we’ve got.”
But while she received chemotherapy, a mastectomy, radiation and preventative medications, she also received palliative care. She just didn’t realize it because nobody used the term.
“It’s probably a good thing, because I would have thought I was on my way out the door,” says the Canton mother of three.
Some of the palliative or supportive care was provided through her cancer treatment providers, the Center for Cancer Care at Charlotte Hungerford Hospital in Torrington and at Yale New Haven Health’s Smilow Cancer Hospital, and some she found on her own, with mixed results.
Following her surgery, her clinical team connected her with a physical therapist to help her get her range of motion back and help with some swelling (lymphodema). She sought out a dietician friend, herself a cancer survivor, for nutritional advice. She saw a therapist to help her deal with the stress, a naturopathic physician for vitamins and a hypnotist someone recommended.
Van de Bogart’s experience is fairly typical. The medical community, cancer patients and their families routinely equate palliative care with hospice care. They’re not synonymous. While both are designed to provide support and symptom management to people with a serious illness, hospice is intended for people whose physicians have determined they have six months or less to live and who are no longer actively fighting the disease.
“They view us as the death squad,” says Dr. Henry Schneiderman, palliative care physician with St. Francis Hospital and Medical Center in Hartford. “The conflation of hospice and palliative care is 103 percent of the general population and 100 percent with health care.”
Palliative Care Vs. Hospice
All of hospice is palliative care, but not all palliative care is hospice, says Colleen Mulkerin, director, palliative care, social work and spiritual care at Hartford Hospital. Palliative care, and the medical sub-specialty, palliative medicine, is specialized medical care for people living with any serious illness, including cancer, heart disease, stroke, Alzheimer’s, Parkinson’s, kidney disease and diabetes, according to the Center to Advance Palliative Care. It focuses on providing relief from the symptoms and stress of living with a serious illness with the goal of improving both the patient’s and family’s quality of life.
“The exciting thing about palliative care — you don’t have to accept anything or give anything up,” Mulkerin says.
Palliative care recognizes that there’s a person and a family invested in the treatment of the illness, she says. While the oncology team’s focus is on battling the cancer, the palliative care team is providing the support that the person and caregivers need from the time patients receive their diagnosis, through treatment and follow up care.
“We often get asked to assist patients and families with clarifying their goals. That can include advance care planning and symptom management,” says Dr. Laura Morrison, an attending physician at Smilow Cancer Hospital who is Yale New Haven Hospital’s director of palliative medicine education. “It’s really not at all about dying. It’s really about living the best that you can.”
While palliative care doctors may prescribe medications to help with pain, nausea and depression, the other forms of palliative care include therapeutic massage, cognitive behavioral therapy, acupuncture, reiki, pet, art or music therapy, help with finding financial support and guidance on writing advance directives, which spell out the patient’s wishes for end-of-life medical interventions. Some cancer centers offer massage and mental health support to the patients’ caregivers, since lessening their stress helps everyone.
Studies Reveal Benefits
Multiple studies show that patients who receive palliative care live longer with a better quality of life. A study reported in the New England Journal of Medicine in 2010 concluded that people with metastatic lung cancer who received early palliative care had less depression, improved quality of life and survived 2.7 months longer than those who did not receive palliative care.
According to an Institute of Medicine study published in 2014 in the Journal of Palliative Medicine, palliative care results in “a better patient experience with improved communication and less distress; better quality of care with less aggressive end-of-life care and more use of home and hospice care when appropriate; equal or even better survival; and significant cost savings,” of an average of $2,700 per person.
“When symptoms are better controlled, when patients are coping better emotionally and when people are able to make sure their treatment aligns with their goals, we know from the literature that people do better and so do their family members,” Morrison says.
Why The Misconception?
Palliative care remains misunderstood, advocates say, because it’s a fairly new specialty, and the holistic approach to patient care has been foreign to Western medicine’s more recent focus on medical specialties.
“So often, in Western medicine, we’re asked to give all control up to our medical team,” says Dr. Kathleen Mueller, medical director at the Center for Integrative Medicine at St. Francis Hospital and Medical Center in Hartford. “I think what we’ve lost is what we can do ourselves. What we can do is work on food, movement, relationships and stress reduction. If you can make yourself more whole going into chemo, you’re going to come out better on the other end.”
While cancer treatment facilities’ palliative care services differ somewhat in how they’re staffed and the support that’s offered, most patients are referred to palliative care by their doctors or nurses. Patients are told they can ask for support, but most don’t ask.
“I think it’s really hard to mobilize the resources if you’re not referred. You’d have to have a really skilled patient or family member,” Mueller says. “I do as many lectures as I possibly can to physicians and nurses to let them know this is available, and still I will have someone say, ‘Why didn’t I know you were here 10 years ago?'”
Even in the medical field, palliative and hospice care are linked, so many oncologists incorrectly view palliative care as end-of-life care, says Morrison. Some providers are moving toward calling it “supportive care,” she says.
MD Anderson Cancer Center in Texas conducted a study that found clinicians referred patients to palliative care sooner and were less distressed about it when it was called “supportive” rather than “palliative” care.
Most subspecialists who treat serious illnesses, Schneiderman says, operate in warrior-mode doing battle against disease; some see a referral to palliative care as a defeat.
As a result, “palliative care is brought in too late. Hospice is brought in too late,” he said. “It’s always too soon until it’s too late.”
UConn Health provides palliative care, but calls it “support care” on the “Patient Resource Center” pages of its website.
“I did some research and found cancer centers, [including MD Anderson,] were moving more towards ‘supportive care,'” says Sarah Loschiavo, a nurse practitioner who serves as the gatekeeper to supportive services offered to cancer patients. “We decided that [patients] would feel more comfortable with ‘supportive care.'”
Living with the uncertainty of breast cancer is challenging for patients and their loved ones, and the added financial burden of copayments and missed work magnifies the stress.
Van de Bogart was receiving chemotherapy in the winter, which is always a challenging time for her family financially because her husband’s business is slowest during the winter months.
One day, when she was receiving an infusion, the social worker stopped by and sat with each patient, asking if there were any issues she could help with. Although Van de Bogart had rated financial concerns as only 1 out of a possible 10 on a questionnaire about sources of stress, the social worker asked her about it. She admitted that the cancer added further strain to the family’s budget.
“She ended up getting some grants from some local cancer funds,” Van de Bogart says. The social worker filled out the application forms for her, and got the family some grocery store gift cards.
“That was really helpful,” she says. “I didn’t seek her out.”
Complete Article HERE!
On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.
We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
Myth 1: positive thinking can delay death
The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.
Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.
For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.
Myth 2: dying at home means a good death
The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.
The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.
It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.
Myth 3: pushing on with futile treatment can’t hurt
A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.
There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.
The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.
Complete Article HERE!
by Kay Bransford
Caught off guard
The final days for both my mom and dad were unexpected. When we got their initial diagnoses in 2012 — Alzheimer’s for dad and vascular dementia for mom — we were told they could live for a decade or more.
Early on, I fought to be their caregiver. Due to the nature of their conditions, they just didn’t recognize how many issues they had managing their day-to-day lives. Eventually, they accepted my help. I adapted to being the primary adult family caregiver and absorbed the additional responsibility to advocate for their needs.
I wasn’t prepared for how hard it would be to make decisions about life and death for my parents. Thankfully, I was very clear on their wishes. I spent most of my adult life living near my parents and visited them two or three times a week. On many occasions, as my parents were watching or caring for their own parents, they would comment on how they would like to be treated.
Over the years, my mom must’ve told me at least a hundred times that “If I end up like my mom, put a pillow over my head.” Obviously, I couldn’t do that, but it reinforced the fact that she wanted quality of life, not just life. My dad wasn’t as conversational about his wishes, but when he would share what was happening to colleagues and friends, we would discuss how our family might face the same situations. In those moments, I also learned what was important to him.
In 2013, after my parents moved into an assisted living community, life and caregiving became much easier, at least for a while. The biggest issue was handling the multitude of calls to come visit. Sadly, my parents never remembered when I visited. They would often call me while I was on the car ride home to ask when I was stopping by.
What’s wrong with dad?
In the spring of 2013, I noticed that my dad was starting to drool, and on some visits, his speech was a little garbled. The staff doctor at the assisted living community didn’t find anything unusual and felt that this was likely related to the Alzheimer’s. I wanted to be sure, so I set up an appointment with a specialist.
The specialist didn’t find anything out of the norm. My parents had dentist appointments coming up, so we decided to wait and see whether the dentist noticed anything unusual.
Unfortunately, the appointments my parents had with the visiting dentist came and went. When it came time to see the dentist, they’d both declined to be seen. They were put back on the dentist’s wait list, but I didn’t want to go that long without conclusive information about dad’s symptoms.
Instead of waiting for the dentist’s appraisal, I requested a swallow consult with the community’s speech pathologist for dad. I was surprised to learn that my dad’s tongue seemed to be paralyzed. My dad was immediately referred to the doctor at the assisted living community. The community doctor found a growth on the back of dad’s tongue and suggested that we see a specialist for mouth cancers right away.
Within a few days, the specialist confirmed that dad had a tumor. The tumor tethered his tongue, which prevented him from being able to move it to swallow or speak clearly. We learned that dad had options for treatment, but they would be extensive: chemotherapy, radiation, and a feeding tube. Thankfully, one of my brothers was able to come to town and help me figure out how to best help our dad.
Deciding what comes next
Two months before the doctor diagnosed dad’s tumor, our parents celebrated their 60th wedding anniversary. As their children, we were proud that we could keep them together as they were both living with similar stages of different types of dementia. There aren’t many options for couples who both need memory care.
Although they were together throughout dad’s new diagnosis, we knew that our mom didn’t understand what dad was facing. What we did know was that they were better as a pair, and we wanted to see if we could get them more time together. We were raised to put up a fight for the things we wanted, and we were prepared to go into battle for dad.
Getting his teeth cleaned by a specialist was the first step in getting treatment for his tumor. In order to get his teeth cleaned, he had to get cleared by a cardiologist for the procedure. This is because they would have to sedate him during the teeth cleaning.
It wasn’t until this meeting with the cardiologist that we realized just how weak he was. During the appointment, dad fell asleep on the examination table, something he would do during the many appointments to come.
We realized that if we moved forward with treatment for the tumor, it would create even more discomfort for our dad. Due to the nature of his dementia, he was already experiencing discomfort in his daily life. It seemed senseless to add yet another layer of suffering when recovery from the tumor wasn’t guaranteed.
We understood that it was time to meet with the hospice doctor to discuss palliative care and make dad as comfortable as we could for the rest of his life. Still, it was hard for us to absorb the reality that our father, a multiwar veteran, was going to die from a cancerous tumor on his tongue.
Dad’s tumor was diagnosed on August 27, 2013, and on September 27, 2013, he passed away in a hospice center. I’m thankful it was swift, but it happened so fast that I was thoroughly in shock, as were we all. Once we realized how much pain he was in, we were happy that he didn’t linger.
For whatever reason, my mom, siblings, and I decided we wanted one last family picture of us surrounding dad’s body. I’ve never seen 5 people look so forlorn in any photograph before or since.
Living with the loss
The coming days, weeks, and months were incredibly difficult to manage. Not only was I grieving for my dad, I was second-guessing my ability to be the family caregiver. I was also trying to figure out how to help my mom who, due to her dementia, couldn’t remember that her husband died.
I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her.
My mom would spend her time roaming around the community looking for dad and grew increasingly anxious when she couldn’t find him. I wanted her to be able to grieve his loss. When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him.
During the first month after dad’s death, mom became very combative with the other residents; before long, she was getting into physical fights with other people in the community. This was a new behavior for her, and it was unlike my mom to be physical.
I was called in to meet with the community’s director who told me we needed to find a way to help my mom manage better in the community or she would have to move out. They suggested we hire a personal care assistant (PCA) to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.
Helping mom adjust
We immediately hired a PCA after meeting with the community’s director. Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. She felt like someone she didn’t know was constantly following her.
Mom was generally suspicious of suggestions from someone she didn’t know well. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day.
I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community.
We needed a community with:
- scheduled activities that my mom would enjoy
- active reminders about upcoming activities or events so my mom wouldn’t miss out
- a standardized menu so that mom didn’t have to figure out how to piece together a menu of her own
- community cues to help mom recognize how to get to her apartment
Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities. They don’t offer activities designed for people with memory issues, and they aren’t staffed to deal with the types of behavior, like paranoia, that might present in someone with dementia.
Before we could finalize the details of mom’s move, she had a major setback. She had been complaining about back pain, so her doctor prescribed her Tramadol. Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs.
We later found out that the medication caused this reaction because of the type of dementia that she had. Her doctor said that this wasn’t uncommon, but it wasn’t something we were prepared for. The possibility of such a reaction was never mentioned to me when she was receiving her prescription.
It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady. Several months passed before she was able to walk on her own again.
Once mom was stable, we moved her into a memory care community. We moved her on January 17, 2015. We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline. Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community.
She was unable to fully recover from the fall and could no longer walk unassisted. To make matters worse, mom would never remember she wasn’t steady on her feet. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff.
Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted. She would do mom’s hair and nails and made sure she was active and engaged in activities. It was nice to have someone I could contact to know how mom was doing on a daily basis.
Saying goodbye to mom
In December 2015, mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury.
Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident.
When I met with the orthopedic surgeon, she confirmed that mom’s hip was broken. She told me that she couldn’t operate until I lifted mom’s Do Not Resuscitate (DNR) order. I was taken aback by the surgeon’s request.
When I asked her why, she said that they’d have to put in a breathing tube. I told her that if my mom died on the table she wouldn’t want to be brought back to a life with dementia. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.
I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The geriatric doctor told me that mom most likely wouldn’t be strong enough to qualify for surgery. A few tests had to be run before we even needed to worry about the surgeon’s request.
The first test identified a heart and lung issue, eliminating the option for surgery. Mom’s body just wasn’t strong enough, and it was easy to see how much pain she was in.
She was alert even after four courses of morphine. She didn’t really understand what was going on. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children.
It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had 24-hour support and hospice care. I called all of my siblings and they scheduled one last trip to see mom.
Over the next week, mom mostly slept. Every day, I’d arrive with lotion and rub her feet. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him.
When I visited her on Christmas Day, her breathing was jagged. I knew she didn’t have much longer. The memory community nurse called at 5:35 p.m. to report that mom had passed away. Even though I felt it coming, I was still stunned. Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye.
Learning to live with my decisions
If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. It’s hard not to second-guess the decisions that I made during my time as caregiver.
A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time. I’m still reminding myself of that. I often share this advice with other caregivers who feel the same remorse about their caregiving journey.
A year has passed, and I’m still learning how to adjust to life after caregiving. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey.
Life after caregiving
While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. I wanted to help other caregivers navigate challenges like the ones I was facing — managing doctor’s appointments, getting finances in order, and maintaining a second home.
This part-time business would become MemoryBanc. For several years, I balanced work by limiting the number of clients I helped so that my parents would always be the priority. When I was grieving my mom’s passing, I realized how much I enjoyed being able to help her lead the life she wanted.
After a few months, I started to take on more clients. It felt good to be able to put my caregiving journey behind me, but also to use what I learned to make me a valuable resource for so many other families. While I still have moments of sadness, I’ve been able to focus on the great lives my parents lived instead of dwelling on the last few years we had together. I’m still adjusting to my new normal.
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