Covid survivors are at risk from a separate epidemic of opioid addiction, given the high rate of painkillers being prescribed to these patients, health experts say.
A new study in Nature found alarmingly high rates of opioid use among covid survivors with lingering symptoms at Veterans Health Administration facilities. About 10% of covid survivors develop “long covid,” struggling with often disabling health problems even six months or longer after a diagnosis.
For every 1,000 long-covid patients, known as “long haulers,” who were treated at a Veterans Affairs facility, doctors wrote nine more prescriptions for opioids than they otherwise would have, along with 22 additional prescriptions for benzodiazepines, which include Xanax and other addictive pills used to treat anxiety.
Although previous studies have found many covid survivors experience persistent health problems, the new article is the first to show they’re using more addictive medications, said Dr. Ziyad Al-Aly, the paper’s lead author.
He’s concerned that even an apparently small increase in the inappropriate use of addictive pain pills will lead to a resurgence of the prescription opioid crisis, given the large number of covid survivors. More than 3 million of the 31 million Americans infected with covid develop long-term symptoms, which can include fatigue, shortness of breath, depression, anxiety and memory problems known as “brain fog.”
The new study also found many patients have significant muscle and bone pain.
The frequent use of opioids was surprising, given concerns about their potential for addiction, said Al-Aly, chief of research and education service at the VA St. Louis Health Care System.
“Physicians now are supposed to shy away from prescribing opioids,” said Al-Aly, who studied more than 73,000 patients in the VA system. When Al-Aly saw the number of opioids prescriptions, he said, he thought to himself, “Is this really happening all over again?”
Doctors need to act now, before “it’s too late to do something,” Al-Aly said. “We must act now and ensure that people are getting the care they need. We do not want this to balloon into a suicide crisis or another opioid epidemic.”
As more doctors became aware of their addictive potential, new opioid prescriptions fell, by more than half since 2012. But U.S. doctors still prescribe far more of the drugs — which include OxyContin, Vicodin and codeine — than physicians in other countries, said Dr. Andrew Kolodny, medical director of opioid policy research at Brandeis University.
Some patients who became addicted to prescription painkillers switched to heroin, either because it was cheaper or because they could no longer obtain opioids from their doctors. Overdose deaths surged in recent years as drug dealers began spiking heroin with a powerful synthetic opioid called fentanyl.
More than 88,000 Americans died from overdoses during the 12 months ending in August 2020, according to the Centers for Disease Control and Prevention. Health experts now advise doctors to avoid prescribing opioids for long periods.
The new study “suggests to me that many clinicians still don’t get it,” Kolodny said. “Many clinicians are under the false impression that opioids are appropriate for chronic pain patients.”
Hospitalized covid patients often receive a lot of medication to control pain and anxiety, especially in intensive care units, said Dr. Greg Martin, president of the Society of Critical Care Medicine. Patients placed on ventilators, for example, are often sedated to make them more comfortable.
Martin said he’s concerned by the study’s findings, which suggest patients are unnecessarily continuing medications after leaving the hospital.
“I worry that covid-19 patients, especially those who are severely and critically ill, receive a lot of medications during the hospitalization, and because they have persistent symptoms, the medications are continued after hospital discharge,” Martin said.
While some covid patients are experiencing muscle and bone pain for the first time, others say the illness has intensified their preexisting pain.
Rachael Sunshine Burnett has suffered from chronic pain in her back and feet for 20 years, ever since an accident at a warehouse where she once worked. But Burnett, who first was diagnosed with covid in April 2020, said the pain soon became 10 times worse and spread to the area between her shoulders and spine. Although she was already taking long-acting OxyContin twice a day, her doctor prescribed an additional opioid called oxycodone, which relieves pain immediately. She was reinfected with covid in December.
“It’s been a horrible, horrible year,” said Burnett, 43, of Coxsackie, New York.
Doctors should recognize that pain can be a part of long covid, Martin said. “We need to find the proper non-narcotic treatment for it, just like we do with other forms of chronic pain,” he said.
The CDC recommends a number of alternatives to opioids — from physical therapy to biofeedback, over-the-counter anti-inflammatories, antidepressants and anti-seizure drugs that also relieve nerve pain.
The country also needs an overall strategy to cope with the wave of post-covid complications, Al-Aly said
“It’s better to be prepared than to be caught off guard years from now, when doctors realize … ‘Oh, we have a resurgence in opioids,’” Al-Aly said.
Al-Aly noted that his study may not capture the full complexity of post-covid patient needs. Although women make up the majority of long-covid patients in most studies, most patients in the VA system are men.
The study of VA patients makes it “abundantly clear that we are not prepared to meet the needs of 3 million Americans with long covid,” said Dr. Eric Topol, founder and director of the Scripps Research Translational Institute. “We desperately need an intervention that will effectively treat these individuals.”
Al-Aly said covid survivors may need care for years.
“That’s going to be a huge, significant burden on the health care system,” Al-Aly said. “Long covid will reverberate in the health system for years or even decades to come.”
It’s taken two years and $1.2 million to get Rhode Island’s 911 system ready to provide CPR and other medical instructions to callers. The system should be working in June. Rhode Island is the last state in New England to provide this service.
It’s been nearly two years since Rhode Island lawmakers approved funding to train all 911 call takers to provide CPR instructions over the phone, but new data shows no improvement in people’s chances of receiving CPR in the critical minutes prior to the arrival of first responders.
Only about one in five people who went into cardiac arrest in their homes or someplace other than a hospital or health care setting in Rhode Island last year received CPR before police, fire or emergency medical providers showed up, according to data provided to The Public’s Radio by the state Department of Health. The state’s bystander CPR rate has remained between 19% and 21% since 2018.“The needle hasn’t really moved,” said Jason Rhodes, the health department’s chief of emergency medical services.
Rhode Island’s 911 system was the subject of a 2019 investigation by The Public’s Radio and ProPublica that raised questions about whether the lack of training for the state’s 911 call takers was costing lives. Among the findings: a 6-month-old baby in Warwick died in 2018 after a 911 call taker gave incorrect CPR instructions to the family.
But Rhode Island’s lack of progress is not for lack of trying. The state had to replace its aging computer-aided dispatch system before the 911 center could install the software that would guide its call takers to deliver the appropriate medical instructions.
“I’m becoming a little bit despondent at this point,” said Dr. Joseph Lauro, an emergency room physician and member of the Rhode Island chapter of the American College of Emergency Physicians, which helped lead the push to improve training. “All those efforts and nothing has happened.”
In June 2019, Rhode Island lawmakers earmarked $220,000 in the state’s budget for the 2020 fiscal year, for training and software that would enable 911 call takers to deliver CPR instructions and other medical assistance by phone.
It was expected to be up and running more than a year ago. But Rhode Island’s EMD training began just last month.
Emergency medical calls in every other New England state are handled by people certified in emergency medical dispatch, or EMD.
“We’re frustrated, too,” about the delays, said J. David Smith, director of the 911 center. But he said the extra time was needed to buy and install a new $1.2 million computer-aided dispatch system so the new software can operate properly. “So that when we finally do this,” he said, “it’s going to be the best it can be.”The training includes following carefully scripted instructions to talk a caller or bystander through performing CPR. The system is used in Washington state’s King County, home to Seattle, a national model for prehospital cardiac care. More than 75% of people in King County who experienced out-of-hospital cardiac arrests in 2020 received bystander CPR.
The new software program also will enable the Rhode Island State Police, which oversees the 911 center, to collect data and track its performance in handling 911 calls. Priority Dispatch, a company based in Salt Lake City, Utah, is providing the software and training under a state contract signed in August 2019 for about $150,000, Smith said.
The center is currently completing training for all 911 call takers and supervisors on the new computer-aided dispatch system, Smith said, and vetting the EMD protocols with state health officials. He said the new system is expected to launch in June. Legislation has been introduced in the General Assembly to mandate that all 911 call takers be certified in EMD, which includes being trained to provide CPR instructions over the phone. A bill (H 5629) introduced by Rep. Mia Ackerman, D-Cumberland, the House deputy majority whip, would require that at least one 911 call taker trained in what’s known as telephone CPR be on duty at all times. A companion Senate bill (S 0385) has been introduced by Sen. Maryellen Goodwin, D-Providence.At a March 30 committee hearing on the House bill, Lauro, the emergency medicine physician, said that as medical director for several EMS departments he reviews cases of cardiac arrest patients treated by emergency medical personnel. “One of the most common things that I find in out-of-hospital cardiac arrest is lack of bystander CPR,” he said.
Dr. Catherine Cummings, president of the Rhode Island Medical Society, said most Rhode Islanders assume that 911 callers routinely receive CPR instructions over the phone, and “are surprised to find out that it doesn’t” happen.
Ackerman said the legislation would ensure that 911 call takers continue to receive the training required for them to maintain their EMD certifications. “The law is the only way to assure that it will happen,” she said. “It’s that simple.”
A similar bill she introduced in March 2019 did not make it out of committee.
Before undergoing gender confirmation surgery at age 17, Indigo Giles had to get approval from a doctor, a therapist and the hospital where the surgery would be performed to ensure there were no options left besides surgery. To even get to that point, Indigo’s father Neil said it took time-consuming research and several reflections as a family before going forward with the process.
The surgery’s impact was immediate, said Indigo, now 19, who identifies as nonbinary. They were able to wear the clothes they wanted to, and their confidence in school and with friends significantly increased. Most significantly, the surgery helped alleviate their severe depression caused in part by gender dysphoria — discomfort related to feeling a disconnect between one’s personal gender identity and the gender assigned to them at birth.
But under a slate of legislation moving in the Texas Senate and House, Indigo wouldn’t have been able to make such a decision until their 18th birthday. In fact, no transgender child in Texas would be able to pursue puberty blockers, hormone treatment or surgery for the purpose of gender confirmation.
Transgender Texas children, their parents, medical groups and businesses have vocally opposed many of the bills lawmakers are pursuing. Equality Texas CEO Ricardo Martinez said Texas has filed more anti-LGBTQ bills this session than any other state legislature.
“It’s insulting,” Indigo said. “These lawmakers think that we don’t know what we want with our own bodies and we’re not able to say what we want and mean it.”
House Bill 1399 would prohibit health care providers and physicians from performing gender confirmation surgery or prescribing, administering or supplying puberty blockers or hormone treatment to anyone under the age of 18. The House Public Health Committee advanced the bill Friday.
Senate Bill 1311 by Sen. Bob Hall, R-Edgewood, would revoke the medical license of health care providers and physicians who perform such procedures or prescribe such drugs or hormones to people younger than 18. The Senate State Affairs Committee advanced that bill Monday.
The Senate last week passed Senate Bill 29, which would prevent public school students from participating in sports teams unless their sex assigned at birth aligns with the team’s designation. While that bill would only affect students in K-12 schools, two similar bills in the House would include colleges and universities in that mandate.
SB 29 has been referred to the House Public Education Committee, which is slated to meet Tuesday and hear testimony on identical legislation that was introduced in the lower chamber. On Wednesday night, the chair of that committee told the Houston Chronicle that the companion legislation, House Bill 4042, is likely dead.
“That bill is probably not going to make it out of committee,” state Rep. Harold Dutton, D-Houston, told the Chronicle. “We just don’t have the votes for it … But I promised the author that I’d give him a hearing, and we did.”
Last session, Dade Phelan, the Beaumont Republican who is now House Speaker, demonstrated a lack of appetite for bills restricting rights for LGBTQ Texans.
“It’s completely unacceptable,” he said at the time. “This is 2019.”
Last week, Rep. Bryan Slaton, R-Royse City, tried to amend a bill on the House floor that would fund prescription drugs for uninsured Texans so that it would exclude hormone and puberty suppression treatments. That amendment failed after it was noted that existing bills were addressing such treatments.
Medical Associations Unite in Opposition to Anti-Transgender Healthcare Bills
In public testimony this year, transgender Texans and their parents have testified in near unanimous opposition to the bills. Several parents described their experience testifying as “terrifying,” worrying their testimony would be used against them should the bills’ penalties become law. Under Senate Bill 1646, which the Senate State Affairs Committee passed Tuesday night, they could be labeled child abusers for allowing their children to receive gender affirming treatment.
That bill comes after Jeff Younger attracted the attention of Gov. Greg Abbott and other top Texas Republicans in 2019 after a dispute between him and his ex-wife turned into a court battle over whether he could oppose his child’s transition. Younger, among others testifying in support of these bills, emphasized young children’s lack of brain development and claimed parents and social media pressure children into identifying as transgender.
But experts say social media and social pressure have nothing to do with it.
“There’s literally zero evidence or research to suggest that that’s true,” said Megan Mooney, past president of the Texas Psychological Association.
According to Mooney, children as young as 2 or 3 can develop ideas about gender identity. By 6 or 7, she said, their sense of gender identity is relatively stable.
For LGBTQ mental health support, call the Trevor Project’s 24/7 toll-free support line at 866-488-7386. You can also call the National Suicide Prevention Lifeline at 800-273-8255 or text 741741 from anywhere in the country to text with a trained crisis counselor. Read our mental health resource guide for more information.
Organ transplants, which are still in the “medical miracle” category, have also had an unprecedented year. In a time when covid-19 has shattered the pleas of so many who prayed for miracles, a Georgia man with two new lungs is among the fortunate.
Mark Buchanan, of Roopville, received a double-lung transplant in October, nearly three months after covid left him hospitalized and sedated, first on a ventilator and then on the last-resort treatment known as ECMO.
“They said that it had ruined my lungs,” said Buchanan, 53, who was a burly power company lineman when he fell ill. “The vent and the covid ruined ’em completely.”
At the time, only a handful of U.S. hospitals were willing to take a chance on organ transplants to treat the sickest covid patients. Too little was known about the risks of the virus and lasting damage it might cause, let alone whether such patients could survive the surgery. Buchanan was turned down at Emory University Hospital in Atlanta, according to his wife, Melissa, who said doctors advised her to withdraw treatment and allow him to die peacefully.
“They were telling me to end his life. I told them absolutely not,” recalled Melissa Buchanan, 49. “We all started Googling any place that would take someone who needed a lung transplant.”
It took calls to several hospitals, plus a favor from a hometown physician, before Buchanan was accepted at the University of Florida Health Shands Hospital, 350 miles away in Gainesville, Florida. He received his new lungs Oct. 28.
Nearly six months later, the transplant landscape has radically changed. Covid-related transplants are surging as hospitals grapple with a growing subset of patients whose organs — most often hearts and lungs — are “basically destroyed by the virus,” said Dr. Jonathan Orens, a lung transplant expert at Johns Hopkins University School of Medicine in Baltimore.
Nearly 60 transplants were performed through March 31 for patients with covid-related organ disease, according to figures released Monday by the United Network for Organ Sharing, which oversees transplants in the U.S. That includes at least 54 lung and four heart transplants recorded since new codes for covid-specific diagnoses were adopted in late October. One patient received a combination heart-lung transplant. Another 26 patients eligible for covid-related lung transplants and one eligible for a heart transplant remain on waiting lists, UNOS data show.
Nearly two dozen hospitals have performed the surgeries, with new sites added every month.
“You’re seeing it move around the country, and it’s moving around pretty quick,” said Dr. David Weill, former director of the Stanford University Medical Center’s lung and heart-lung transplant program who now works as a consultant. “It’s like wildfire, where centers are saying, ‘We did our first one, too.’”
A “completely new category of transplant patients?”
The upsurge in transplants has been fueled largely by the broad reach of the virus. As U.S. covid cases top 31 million, with more than 560,000 deaths, thousands of patients who survived particularly serious infections are left with badly damaged organs that pose life-threatening complications.
“I think this is just the beginning,” said Dr. Tae Song, surgical director of the lung transplant program at the University of Chicago Medical Center. “I expect this to be a completely new category of transplant patients.”
Tens of thousands of patients whose organs were otherwise healthy have developed severe, chronic lung disease after contracting covid. Because it’s a novel disease, exactly how many will go on to need lung transplants isn’t yet clear, said Weill, who has called for the development of a lung transplant registry to track outcomes.
So far, the rise in covid-related transplants has not dramatically affected the existing waiting lists for organs. Of the more than 107,000 patients on waiting lists, about 3,500 need hearts and more than 1,000 need lungs. Most of the rest are waiting for kidney transplants, which have not been subject to a significant increase because of covid.
Organs for transplant are allocated according to complicated metrics, including how long the patients have been waiting, how ill they are, how likely they are to survive with a transplant and how close they are to donor hospitals. The goal is to treat the most medically urgent cases first. The rules don’t necessarily bump covid patients to the front of the line, experts said, but many become sick enough to require immediate care.
That was the case for Al Brown, a 31-year-old car salesman in the Chicago suburb of Riverdale, Illinois, who caught covid in May and was diagnosed with congestive heart failure several weeks later. In September, he woke up with severe chest pains that sent him to the emergency room.
“Shortly after, they told me my heart was working at only, like, 10%,” Brown said. “It wasn’t pumping blood through my whole body.”
Medications didn’t fix the problem, so doctors offered him several choices, including a mechanical pump to help his heart temporarily — or a transplant. “They told me, basically, I was young and I had a lot of life left in me,” said Brown, the father of two young daughters. “I actually picked the option of a heart transplant.”
Brown, who had hit the gym regularly, was an ideal candidate, said Dr. Sean Pinney, co-director of the heart and vascular center at University of Chicago Medicine. “This guy was healthy except for covid, except for heart failure.” Brown received his transplant in October and continues to recuperate.
Most covid-related transplants are performed on patients whose lungs have been irreversibly weakened by the disease. Thousands of covid survivors have developed ARDS, or acute respiratory distress syndrome, which allows fluid to leak into the lungs. Others develop pulmonary fibrosis, which occurs when lung tissue becomes scarred.
“What was once a scaffold of soft, living cells turns into a stiff mesh that’s not capable of exchanging gases,” said Song.
While conditions like pulmonary fibrosis typically develop over months or years, often in response to toxins or medications, covid patients seem to get much sicker, much faster. “Instead of months, it’s more on the order of weeks,” Song said.
These patients are often placed on mechanical ventilation and then ECMO, or extracorporeal membrane oxygenation, in which a machine takes over the functions of the heart and lungs. Many become stranded on the machines, so sick that their only options are transplantation or death.
Even then, not everyone is eligible for a transplant. In many covid patients, damage isn’t limited to a single organ. Others have preexisting conditions such as diabetes or obesity that can complicate recovery from surgery or preclude it entirely. And, often, those who have been sedated for weeks or months aren’t likely to survive the trauma of transplant.
Transplants: primarily an option for under-65 patients
Successful transplant candidates are likely patients younger than 65 who are otherwise healthy and whose lungs will not heal on their own, said Dr. Tiago Machuca, chief of thoracic surgery at UF Health Shands Hospital, who helped draft suggested guidancefor covid-related lung transplants.
“This is a very different profile of patients,” said Machuca. “These patients had normal lung function. They’re young, and now they find themselves on mechanical ventilation or ECMO, fighting for their lives.”
Mark Buchanan landed in that situation last fall after his entire family caught covid. His children, Jake, 22, and Lauren, 18, had mild cases. His wife, Melissa, was quite ill, though never hospitalized, and quickly had to turn to helping her husband.
“I had to rely solely on God and my family and friends,” she said. “It’s hard to explain how stressful it was.”
Buchanan survived the transplant and then spent three months recovering at the Florida hospital. He lost more than 70 pounds and was weak. “I couldn’t brush my teeth or feed myself,” he said. “I had to learn to eat, swallow, talk, walk all over again.”
Buchanan arrived home in January to a parade of 400 neighbors and friends. He has begun speaking to church groups and others about his fight for a transplant. Many people in his small community remain skeptical about covid. Wearing a mask and keeping his distance, he tries to set them straight.
“People still make a joke of it,” he said. “But I was in the hospital 170 days. You tell me: Is it real or not?”
Buchanan was one of at least 17 patients to receive covid-related lung transplants at Shands in the past year, the most of any hospital in the country. Machuca credits its dedicated lung unit, which had already focused on patients with complex respiratory conditions.
It remains unclear whether widespread vaccination will stem the number of covid patients who require transplants — or whether transplant candidates among survivors will continue to rise. There’s no doubt, however, that the pandemic has changed the profile of those considered for lung transplantation, Machuca said.
“Before covid, transplanting patients with acute respiratory failure was a ‘no,’” he said. “I think this is expanding the limits of what we felt was possible.”
This is the second part of a two-part article on the aims and practice of palliative care and its essential philosophy and concepts.Originally published by the Vermont Nurse Connection, DailyNurse thanks the ANA-VT and the authors for graciously allowing us to re-post this. Click here to read Part One.
There is a growing body of evidence showing that palliative care results in an improved quality of life for people with serious illnesses. It’s also been shown to result in higher levels of patient satisfaction and improved outcomes at the end of life. While it’s not hard to understand why a palliative approach might improve someone’s quality of life or lead to greater satisfaction with care, it’s also been found that the costs associated with someone’s care usually decrease as a result of palliative involvement. This is likely due to palliative care’s emphasis on uncovering a person’s goals and values and then building a care plan to which these goals are central.
For example, the standard treatment offered by our healthcare system is aggressive, disease-directed care right up until the moment of death, which is fine, but is not what everyone wants. Collaborating with patients and offering care based on their values (instead of the system’s), especially when those values mean something other than intensive hospital-based care, inevitably results in lower costs. But one of the more unexpected benefits of palliative care turns out to be longer life: which has been found in a few studies in both the cancer and heart failure populations.
We hope that the two case studies presented below will illustrate a few palliative care interventions as well as highlight the role that RNs and LNAs can have in treating suffering. We hope this article has given you a better sense of what palliative care has to offer, and also how RNs and LNAs, because of their scope of practice, are in a unique and privileged place to provide this care.
Case 1, “Charlie”: Discussing the Future with a Heart Failure Patient
Charlie calls the heart failure clinic with a question about his symptoms. As the clinic nurse you have seen Charlie get all the best possible treatment over the past three years, including a biventricular pacemaker with a defibrillator. You are worried now because despite everyone’s best efforts he is beginning to have more shortness of breath. You talk to his cardiologist to determine next steps, and then phone Charlie back with instructions to increase his torsemide and monitor his symptoms over the next few days. He shares that he’s worried: does this mean that his heart failure is getting worse? You resist the urge to “fix his feelings,” and instead say, “I am worried too, we are going to do our best to help support you and try to improve your symptoms.”
Charlie calls back two days later to say how much better he feels. This is good news, but you decide to deepen the conversation, saying, “I would really like to learn more about you so that we have a better sense of how to care for you going forward. Could I ask you a few questions?“ Charlie welcomes the chance to talk, so you continue: “At this time in your life, what things are most important to you? When you think about your future, what are you hoping for? And what are you most worried about?” Charlie gives you a wealth of information, and you document your conversation in the chart.
The next week Charlie comes in for his routine clinic appointment. He lets you know that the conversation you had with him was very helpful and relieved some of his stress and worry. He asks if there are other things he should be thinking about? You steer the conversation to what’s known as “advance planning”: “Have you completed an advance directive? If you were so sick that you couldn’t make your own medical decisions who would make them for you? Finally, you offer to help him complete his advance directive (this is a document identifying a health care agent as well as what forms of treatment you would/would not want).
Case 2, “Alison”: Providing Comfort and Support for a Stage IV Cancer Patient
Alison is being admitted to the cancer floor with abdominal pain related to stage IV ovarian cancer. Sarah is her nurse for the evening shift. Alison’s pain requires regular use of her PRN dose just to keep it under control. She also shares that she is not sure that she wants to continue chemotherapy. Sarah calls the attending and recommends a palliative care consult. “Alison is using frequent PRN doses and I feel her symptoms could be better controlled. She is struggling with what her care should look like going forward.” The attending physician is convinced and orders a palliative care consultation.
Later that evening Alison’s LNA, Beth, finds her sitting up in the chair crying. Alison shares that she just got off the phone with her teenage son, and she is worried about him. Beth asks Alison if it would be OK if she just sat with her. Alison agrees and they sit in silence for a while until Alison starts sharing about how hard this has been. Beth offers a supportive statement, “I cannot imagine how hard this must be for you.” Beth listens as Alison describes how wonderful her son is and how he has been caring for her. Beth says, “You must be very proud of him… How do you hope he’ll remember you?”
Over the course of Alison’s hospitalization, she is started on scheduled doses of long-acting morphine, and her pain decreases. She rarely requires PRN doses. However, then at a family meeting her oncologist shares that there are no more cancer treatments available. Alison asks Sarah’s opinion about whether or not she should go home on hospice. Sarah assesses Alison’s understanding, asking her what she knows about hospice. Alison answers that she is not sure, but that her doctors said since there are no more cancer treatments she should “consider hospice.” Sarah describes hospice as an extra layer of support to help people make the most of the time they have left, and when they are closer to dying, to ensure they have a peaceful death. Alison starts to tear up and asks, “Does this mean I am dying now?”
In response, Sarah gently asks Alison to say more about what she is feeling. Alison goes on to share that she hopes she has more time to spend with her son, and to be able to see a few more of his tennis matches. Sarah responds, “I hope that you are able to do this too.” Alison goes on to tell you more about her son and her attempts to ask him about her illness. Sarah shares that hospice can also provide support for having these conversations and will also be there to provide bereavement support for Alison’s family after her death. After Sarah spends time addressing Alison’s concerns while also responding to her emotions, Alison seems more at peace.
This is the first part of a two-part article on the aims and practice of palliative care and its essential philosophy and concepts.Originally published by the Vermont Nurse Connection, DailyNurse thanks the ANA-VT and the authors for graciously allowing us to re-post this.
Palliative care is essentially an interdisciplinary endeavor, requiring the special skills and knowledge of physicians, nurses, social workers, and countless others in order to effectively care for patients with serious illnesses. In fact, Dame Cicely Saunders, whose pioneering work is the basis of modern palliative care, was herself a sort of interdisciplinary team, having trained as not only a nurse, but also a social worker and physician.
The American Academy of Hospice and Palliative Medicine (AAHPM) describes palliative care as “patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering,” which feels very closely aligned both with nursing’s traditional focus on holistic, person-centered care, and with the American Nurses Association’s philosophy of nursing (ANA website, 2015), which emphasizes the relief of suffering and the care of both patients and families. We have always been struck by the strong resonance between nursing and palliative care, and it’s part of what inspired us to write this article on palliative care specifically for RNs and LNAs.
We find it kind of astonishing that caring for the suffering and dying was so chronically overlooked that a specialty had to be created to address these needs. Up until that time, medicine concerned itself with curing or preventing disease, and there was no room for a methodical, evidence-based approach to the treatment of suffering or the care of the dying. Even today, it’s not uncommon for patients at the end of life to continue receiving aggressive and often unhelpful treatment focused purely on their diseases, and to eventually die in the hospital.
Given the alignment between nursing and palliative care philosophy, it’s not surprising that RNs and LNAs are central to palliative care. Some of you may have helped care for patients and families at the end of life; most of you have likely cared for patients with serious or life-limiting illnesses, and all of you have seen how your patients and their families can suffer. As such, you are uniquely positioned to help relieve that suffering, whether it’s through the swift identification of symptoms, the timely delivery of appropriate medication, the willingness to offer therapeutic presence to someone in psychological or emotional distress, or the courage to advocate for patients or families in distress.
Is “Palliative Care”the same thing as “Hospice Care?”
Before we go further, it may be helpful to define some of the terms you’re likely to encounter. Many of you may have heard the words “palliative care,” “hospice care,” or “comfort care” being used somewhat interchangeably, though in truth there are important differences. For example, while both palliative care and hospice focus on identifying patient goals and values, treating burdensome symptoms, and optimizing quality of life, palliative care can be delivered at any stage of illness (from the time of diagnosis onward), and can be offered alongside disease-directed treatment. Hospice, on the other hand, while essentially identical to palliative care in terms of treatment, focuses on patients with an expected prognosis of six months or less who have elected to forgo further curative treatment.
So, given that all hospice is palliative care, but not all palliative care is hospice, you could be forgiven for asking why hospice exists at all. The short answer is that hospice’s specific “six months or less” prognostic criteria is what is used to qualify patients for Medicare’s hospice benefit, which picks up the tab for medications, equipment for the home (which is where many hospice patients spend their final days), as well as home visits from physicians, nurses and other providers. The longer answer is that hospice got there first (recall that Dame Saunders opened her hospice in 1967, whereas palliative care only became a defined medical specialty in 2006).
In addition to being an insurance benefit, the term “hospice” can also refer to a facility where patients receive end-of-life care, as well as a philosophy of caring for the dying that emphasizes the relief of not only physical suffering, but also emotional, spiritual, psychological, and social pain (together referred to as “total pain”). This innovative approach to end-of-life care eventually gave rise to palliative care, which broadened the concept of hospice to encompass the entire trajectory of serious disease.
Terms such as “comfort care” or “comfort measures” are also commonly used, particularly in the form of “shop talk” between providers (during change-of-shift report, for example), but use of “comfort measures only” or “CMO” is discouraged as it implies a limited form of care, as in “you’re only getting this limited form of treatment, as opposed to the whole enchilada”. Unfortunately, many providers, patients, and families have this idea that palliative care means a failure (either a failure of the patient to “fight,” or a failure of the provider to “cure”), and is therefore a consolation prize, a second-hand form of medical care. You may sometimes see this attitude among providers who vaguely refer to palliative care as simply “loading them up with morphine.”
But the fact is, palliative care is not some watered-down, inferior form of treatment, nor is it intended to hasten death. Rather, just as oncology or cardiology are medical specialties that aggressively treat cancers or diseases of the cardiovascular system, so palliative care is a medical specialty that aggressively treats and seeks to remove sources of suffering.
Treating Patients for Pain and Suffering
We’ve talked a lot about relieving suffering, but what does that actually look like at the bedside? How do you go about treating something that you can’t really test for or objectively measure (even the pain scales, for instance, are simply ways to track a subjective experience over time)?
It may be helpful to think for a moment about what we mean by the word “suffering.” Suffering is not just experiencing pain or misfortune. Take the muscle pain you may experience a day after some strenuous exercise; it’s not uncommon to hear people describe this as “good pain.” Interpreted as a sign of accomplishment or muscle development, the pain is seen as a good thing: yes, there is pain, but there is no suffering. And then contrast this with the pain experienced as a result of illness. There may be no difference, physiologically, between these two instances of pain. Both are the result of a complex neurohormonal cascade of stimuli and response. But because the pain from illness is very likely to be interpreted as a sign of decline and even death, it typically leads to what we would describe as suffering. So to summarize, pain is simply a physiological phenomenon, while suffering is what that pain means to us.
Treating suffering, therefore, means first understanding how that person is suffering; understanding the significance of what they are going through, and organizing our treatment around their experience. This might sound mysterious, but it’s usually straightforward: for example, pain medication for a patient who is writhing and grimacing.
Medical management of symptoms is a significant part of palliative treatment. Pain is often the most distressing symptom for patients, but dyspnea, nausea and vomiting, constipation, depression, and anxiety can also significantly diminish someone’s quality of life. We use familiar medications such as opioids and NSAIDs, laxatives, anticonvulsants, SSRIs, and benzodiazepines, but we sometimes use them in unfamiliar ways (using haloperidol to treat nausea, for example). By treating the symptoms we do often manage to treat the suffering (for example, a patient may be suffering from the fear that they will always be in pain, and by relieving their pain, we also relieve this fear). But sometimes merely treating symptoms is not enough to also relieve suffering, and this is why much of palliative care takes place in the form of conversations with the patient and their family, in which we try to explore with the patient and/or family how things are for them, and the ways in which they’re suffering as a result of their situation.
In addition to more broadly therapeutic conversations, where you may simply be offering a comforting presence as a patient talks about their fears, anxieties, regrets, and hopes, there are also more focused types of interactions where you are trying to help the patient come to terms with the nature of their illness and, with that in mind, support them as they decide how they want to be cared for. Essentially, this means working with the patient to help them understand the nature of their illness, as well as where they are with relation to the illness trajectory (for example, gently helping someone understand that their cancer will cause their life to end at some point, but that for them that is likely still a few years away).
In this example, with death still somewhat remote, the patient may feel safe engaging in a conversation about what sort of care would make sense for them as they get sicker, or about who should speak for them if they can’t speak for themselves (eg, designating a health care agent). People’s values and priorities do change, however, and a more intense version of this conversation often takes place when the patient’s disease is more advanced and they are nearing the end of their life.
In this case, the conversation is about supporting the patient as they grapple with the fact that their time is short, and then helping them identify what’s most important to them at this point and how their medical care should reflect that. An example of this would be a patient who only has a short time to live, and for whom the most important thing is being comfortable and being at home with her family (as opposed to being in the hospital and continuing to receive treatment directed at controlling the underlying disease). In this case, given that the patient’s goals are to be comfortable and to be at home, the most appropriate treatment would be a comfort-directed plan of care focused on symptom management, and discharge home to be cared for by her family as well as the community hospice team.
Goals of Care Conversations
We call these conversations “goals of care conversations” because we hope through them to identify what a particular person wants in terms of their treatment outcomes (eg, “I want to be pain-free,” or “I want to live at all costs”). Once we’ve worked with the patient to identify these goals, we can use them to create a plan of care that is “goal concordant,” or that aligns to their wishes. Some patients’ goals are to be comfortable and to die at home, while others want “everything done,” and accept that this means they may die in the ICU. In reality, most people want something in between, navigating some trade-off between quality of life and length of life. These goals of care conversations may seem unique in some ways (the specifics of each patient’s lived experience) and in the dynamics, the back-and-forth or the “dance” of the conversation itself, but the deeper truth is that all of these conversations begin and end in the place where a human being confronts and attempts to reconcile themselves to their mortality, to the fact that they (that each of us) is going to die.
The value of palliative care at these moments is creating a space that allows the exploration of hopes and priorities that can then be used as guideposts when creating an actionable plan of care. As part of a complete “goals of care conversation” we must also signal a willingness to uncover fears and worries, such as the fear of dying, fear of the unknown, of having uncontrolled symptoms at the end of life, or being a burden on families. Knowledge of these fears help us stay one step ahead of their suffering and further informs the plan going forward.