- Palliative Care: Bringing Comfort
- What is palliative care?
- The palliative care process
- How to get palliative care
- Five things you can expect from your first palliative care meeting
- Why Johns Hopkins Medicine’s Palliative Care Providers Weren’t Pals to Me When My Husband Was Fighting A Brain Tumor
- Pain Management and Palliative Care Residency Program
- Program Overview and Objective
- Training Experience
- Core Rotations
- Elective Rotations
- Longitudinal Clinic
- Application Information
- Program Director
- Palliative Care Methods for Controlling Pain
- Principles of palliative care and pain medicine
- Understanding opioid drugs
- Understanding helper drugs
- Other pain control interventions
- Palliative Care Questions to Ask Every Advanced Cancer Patient
- Palliative Care and Pain Program: Johns Hopkins Sidney Kimmel Comprehensive Cancer Center
- How to contact us:
- About the Palliative Medicine Program | Johns Hopkins Medicine, Palliative Medicine
Palliative Care: Bringing Comfort
When people hear the term palliative care, many assume that it's a treatment only for someone who is dying. But palliative care can also be used to bring physical and emotional comfort to anyone with a serious illness. Palliative care can benefit any patient at any age. And any stage of his or her illness.
What is palliative care?
Palliative care focuses on improving a patient’s quality of life by improving the symptoms of his or her illness, such as pain, shortness of breath, and trouble sleeping. It's used with a variety of ailments. This includes cancer, chronic obstructive pulmonary disease (COPD), kidney failure, or heart failure.
Palliative care is not meant to cure an illness, but it can be given at the same time as medical treatments. It may be given at a hospital, a long-term care facility, or even in your own home. You don’t have to give up your existing healthcare provider to have palliative care.
The palliative care process
A team of specialists, including healthcare providers, nurses, pharmacists, nutritionists, and spiritual professionals, often work together to provide palliative care. This teamwork allows a number of treatment methods to be used to relieve symptoms.
One of the most common palliative care treatments is pain management. This may be done with pain-relieving medicines ibuprofen and acetaminophen or stronger drugs morphine. Nondrug therapies, sometimes called complementary therapies, may also be part of the pain management plan. These may include massage therapy, relaxation methods, music therapy, acupuncture, and aromatherapy.
Palliative care may also involve nonmedical support for patient and family members a. Emotional support, spiritual guidance, and help navigating the healthcare system may be provided. If a patient has anxiety or depression as a result of his or her illness, palliative care can help ease that, too.
People with serious illnesses often experience extreme tiredness, and palliative care specialists can find ways to help restore energy and enable them to perform day-to-day tasks. For example, you might be advised to do a task, bathing, at a time of the day when you’re at your best. Dietary changes and a regular rest schedule might also be suggested to keep your energy up.
How to get palliative care
If you are interested in palliative care for your illness, the first step is to speak with the healthcare provider who is treating you.
Be sure to explain what is most important to improving your quality of life — this may be aggressive pain management, the ability to be treated at home, or something else entirely.
Your healthcare provider can refer you to a palliative care service organization.
Most insurance plans, including Medicare and Medicaid, cover palliative care services. This depends on the situation. If you're concerned about the cost of palliative care, a social worker from the palliative care organization can help to address any questions you have.
Five things you can expect from your first palliative care meeting
If you are facing a serious illness and have asked for palliative care or were referred by your physician, you may be wondering what the first meeting will be . Here are five things you can expect.
You will learn how the palliative care team can help
Rab Razzak, a palliative care doctor at Johns Hopkins Medicine, says one of the first things he asks his patients is: “What do you know about palliative care?” If a patient is uncertain about what it is and what to expect, he takes the time to explain it.
“From the onset, it is important that patients have a clear understanding of who we are and how we can support them,” says Dr. Razzak. “It’s the first step in building an open and honest relationship.”
Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the pain, symptoms and stress of a serious illness. The core palliative care team typically includes palliative care doctors, nurses and social workers.. This team approach is in place to offer you an extra layer of full, well-rounded support.
You will get to ask questions
Palliative care is a two-way relationship between you and your specialists. In every meeting, you have the opportunity to ask any questions you may have about palliative care, your illness and your treatment options. Here are some suggestions of what to ask in your initial meeting.
You will be at the center of your care
Palliative care is a patient-centered approach, which means that the team wants to hear your story. In addition to addressing your pain and other symptoms, they will give you the chance to discuss how the illness is affecting your life. If willing, you’ll also be able to talk about any fears or anxieties surrounding your illness, treatments or medications.
“Every person is different,” says Dr. Razzak. “Because of that, it is vital that we get to know who the patient is and what his or her values are so we can begin to discuss goals or decisions regarding treatment options or pain management plans.”
Your loved ones have seats at the table too
Your palliative care team welcomes your family members or anyone in your support system to each meeting. Your team can provide them emotional support, and can give them tools to help care for you. If you would , they will also include them in the decision making.
Laura is the daughter of a patient who is receiving palliative care. Here she discusses the impact of meeting with the palliative care team.
All of your information will be explained
The palliative care team works in close partnership with your other doctors. Because of this, they can provide you a full understanding of your illness and your symptoms.
In this video, Amy, a woman who was diagnosed with Stage IV inflammatory lung cancer and is currently living well thanks to palliative care, discusses the importance of having all of your information in one place.
The goal of the initial meeting is to eliminate any confusion surrounding your care. You and your team will explore your personal goals and needs. They want you and your loved ones to leave the meeting feeling both informed and empowered to take the next steps with confidence.
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Why Johns Hopkins Medicine’s Palliative Care Providers Weren’t Pals to Me When My Husband Was Fighting A Brain Tumor
Dear Dr. Death and Nurse Hatchet,
Remember me? Nearly two years ago, Johns Hopkins Medicine consigned my beloved husband to your so-called palliative care without telling me it was effectively a death sentence.
Given the time we spent together during my husband’s final two weeks on this planet, when his treatment was at a critical juncture, I’m sure you won’t mind me dispensing with the formalities in addressing you — and besides, this way, we can keep this incident confidential, nice and quiet and swept under the rug which is what Johns Hopkins Medicine would prefer.
And now that I’ve mentioned it, why don’t we begin with the topic of preference.
Specifically, don’t you find it just the tiniest bit ironic that I’m inclined to abide by Johns Hopkins Medicine’s preferences, when never once during your treatment of my husband were you willing to abide by mine. Given that nearly two years have passed since my husband’s undeserved death, I imagine that a refresher is in order.
So briefly, here are the critical deets. My husband was diagnosed with a Grade 3 brain tumor in July 2014. After weighing the option, I chose treatment at Johns Hopkins Medicine because of its self-proclaimed experience and familiarity with the most advanced treatments available.
That’s a bunch of hogwash, of course — my husband was consigned to the Stupp “Try & Die” Protocol — basically a six-month treatment of radiation and chemotherapy that patients must endure to gain access to trials, precision medicine and the host of other sexy advancements that capture our imagination every May during Brain Cancer Awareness Month.
If patients don’t make it through Stupp — and most of the more serious cases do not — there aren’t any second chances.
So in some ways, my husband was fortunate. After an initial decline — ly due to hydrocephalus which heralded his diagnosis and the trauma of radiation and a biopsy — my husband’s cognitive abilities returned.
Slowly but surely, five months into treatment, he resumed driving, using his phone and telling terrible puns and became once again engaged with family and friends. The radiographic data showed that I wasn’t imagining this improvement either: against all odds, my husband’s tumor remained exactly the same size.
Sure, the tumor didn’t shrink, but given that advanced brain tumors can quadruple in size in a matter of weeks, intertia was cause for hope.
So after a couple of months on the upswing, when my husband lost his appetite and energy, naturally, I was concerned. I tried to make an appointment with his neuro-oncologist when his situation didn’t improve, but the Johns Hopkins Medicine schedulers didn’t seem to understand the urgency of the situation and couldn’t make that happen.
In the interim, I reluctantly agreed to meet with a palliative care nurse — that would be you, Nurse Hatchet. Because in spite of my lengthy back story, the fact that my husband was still in active treatment and my stated desire to address his eating problems, you asked my husband which hospice he wanted to be admitted to.
At the time, my husband — who had just had a job interview for a high level programming position two days earlier — wasn’t under the impression that he was on death row, and he responded by saying “Why do I need hospice? I’m not dying am I?” After an awkward pause, you ignored the comment and reluctantly agreed to administer a teensy dose of steroids that I knew wouldn’t make a difference.
Yet weeks later, after my husband died and I reviewed your notes, you’d written that he was suffering from dementia because he didn’t understand his condition!! No, Nurse Hatchet — it was you who didn’t understand his condition because you refused to listen to us.
And you did that because my husband had a brain tumor, that he was going to die anyway — indeed, that he didn’t realize and accept it was evidence of dementia — and so why not put him down now?
But Nurse Hatchet — at least I can forgive your shortcomings. You were young and inexperienced and most ly just following all of the crap that they fed you in your Palliative Care program.
You hadn’t yet developed a sense of judgment and so you played it by the book.
In any event, you didn’t have a clue as to what you were doing anyway — so you couldn’t have helped my husband even if you’d been inclined to do so.
It’s you Dr. Death, who I blame — because you knew better and followed your own wishes in treating my husband instead of our wishes. Let’s take another step back.
When my husband continued to refuse to eat and grew weak (something that would happen to any person whether afflicted with brain cancer or not), and his oncologist appointment was still two days away, I brought him to the emergency room and he was eventually sent to a unit where you were assigned to his care.
I asked again and again if he could see his neuro-oncologist — something that you could have facilitated since you all worked for Johns Hopkins Medicine — but you didn’t. I asked if you could administer more steroids — I explained that when he was first diagnosed, he’d been on a dose of 16 mg/ — and he could have gone higher. But you wouldn’t do that.
I begged you to give my husband cannabis to stimulate his appetite, but you refused to do that either. Instead, during every meeting — and your notes confirm this — you spent your time trying to get me to accept “the reality” of the situation. You ignored everything I told you about the tumor not growing and about my husband’s improvement.
You ignored every single one of my requests for treatment. You ignored my pleas to allow him to see his neuro-oncologist who would have seen that something was wrong and ordered an MRI where the minor swelling that would eventually kill my husband could have been caught and addressed at the outset of his admission instead of waiting 10 days to do an MRI.
You, Dr. Palliative Care, were no pal to me. A pal does not impose his judgment on others. A pal does not elevate his own experience and beliefs about terminal illness and dying and quality of life to those actually going through it.
I’m sure Dr. Death that you read about the well-publicized story of Brittany Maynard, the 29-year old diagnosed with brain cancer who moved to Oregon where physician-assisted suicide is legal so that she could take her own life rather than suffer with her illness.
You probably thought that Brittany Maynard spoke for all brain tumor patients — and if you did, you were dead wrong. Brittany Maynard’s story hit the news a few months after my husband was diagnosed and I asked him his opinion of her choices.
My husband told me that because she was in pain and did not have children, she made a choice that was right for her, but not right for him. He wanted to stay alive as long as he could to visit our older daughter at college, to see our younger daughter graduate.
He was not in pain and was enjoying his time at home with family and friends. You stole all of that from him when you refused to give him the care he was entitled to.
If my husband had not been terminally ill, there’s no question that you would have fed him, forcefully if necessary. No doubt that you’d have ordered a battery of tests to get to the bottom of the problem. But because he was terminal — because he was going to die anyway, you figured that just a dog, it might as well be sooner rather than later.
Dr. Death and Nurse Hatchet — I’m sure you’ve heard the phrase “a good death” in your Palliative Care courses. As you know, a good death is when a person dies on his or her own terms, free from pain and with integrity — and that is what you palliative care folks try to accomplish.
But what if a person can’t communicate, or hasn’t had a chance to articulate his vision of a good death? That was true of my husband. Because his tumor was stable, because he was improving, because he had no pain and was enjoying his time — we had never had a chance to discuss, since our Brittany Maynard conversation — what his end game was.
I — his wife, the person on this earth who was closest to him for 25 years and knew him almost as well as he knew himself — had to speak for him, and when I did, you ignored me. In doing so, you not only disrespected me, but you disrespected the wishes of the patient who you were supposed to help.
And anyway, what in the hell made you think that you were more qualified to make life and death decisions for my husband than me, his wife?
My husband has been gone almost two years. With or without your road blocks, I suspect that would have happened anyway. Then again, maybe not. Two months after my husband died, the FDA approved the Optune Cap.
Four months later, surgical techniques emerged that might have allowed for his tumor to be de-bulked.
When it comes to terminal illnesses where research is advancing and so little is known, you palliative care doctors don’t know any more about what is going to happen than I do.
But let’s assume, for the sake of argument, that my husband’s life with or without intervention would have been short. Sorry, Dr. Death and Nurse Hatchet — that still doesn’t let you off the hook. You butted in and imposed your narrow views where they weren’t needed or wanted, and in doing so, you took the experience of a good death away from me and my husband.
You put me in a situation where I spent the last two weeks of his life fighting for what he wanted, and you made a mockery of our relationship and our marriage by assuming that you knew more about what he wanted than I, his wife of 23 years. And for two years since, you made me put my life on hold as I grappled with anger and second-guessing and shame that I didn’t do enough.
How dare you?
After nearly two years of counseling, group support and meds, I’m finally ready to move forward. In that spirit, here’s what I’d to see. First, the standard of care for treatment of terminal patients by palliative care doctors should be the same as for non-terminal patients.
If an otherwise healthy adult suffering from anorexia came into an emergency room, you’d feed her, not starve her her misery. The same principle should apply to a terminally ill patient who has otherwise been stable. Second, hospitals should disclose the risks of palliative care treatment and obtain patient consent.
I found that once I was even willing to talk to Dr. Death and Nurse Hatchet, it was assumed that I was giving up on my husband, when in reality, I was grasping for any option available. Had I know that Dr. Death and Nurse Hatchet had no intention of trying to help my husband recover and that had been disclosed, I would have affirmatively refused treatment.
Finally, even though the trend today is death with dignity and quality of life over quantity, someone needs to be the arbiter of that particularly if the patient temporarily isn’t able to speak on his or her own behalf.
If that’s the case, the judgment of the palliative care doctor who has spent a full 15 minutes with a patient should not take precedence over a reasonable spouse who loved her husband and vowed to support him and stand up for him when he wasn’t able to do it himself.
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Pain Management and Palliative Care Residency Program
The Department of Pharmacy Services at The Johns Hopkins Hospital offers an ASHP accredited PGY2 Residency in Pain and Palliative Care Pharmacy Practice. This program is based upon the ASHP PGY2 Educational Goals and Objectives for Pharmacy Residencies in Pain Management and Palliative Care.
Program Overview and Objective
The residency focuses on the development of expert competencies and skills needed to provide pharmaceutical care to pain management and palliative care patients. Graduates of the program will be highly qualified independent practitioners and educators who display professionalism and leadership.
It is assumed that the resident already possesses basic knowledge and competencies in institutional and clinical pharmacy practice gained through completion of a PGY1 Pharmacy Residency.
The specific program for each resident may vary in structure and area of emphasis the individual resident’s entering knowledge, skills, and interests.
This program is designed to provide advanced training in clinical pharmacy practice focusing on patient care, clinical research and education in pain management and palliative care. A multidisciplinary approach to inpatient and outpatient pain management and palliative care is used.
Patient care experiences occur in the cancer center, neurosciences, acute and chronic pain services and hospice. The longitudinal is completed in the Pain and Palliative Care clinic in the cancer center. Other experiences may include the psychiatric pain service, pediatric pain service and teaching opportunities at the Colleges of Pharmacy in the Baltimore area.
- Experience in various pain syndromes
- Symptom management
- End of life care
- Pharmaceutical care to patients with acute and chronic pain
- Interdisciplinary functions such as Oncology Grand Rounds, Blaustein Pain conference, Palliative Care Rounds, Cancer Pain conference, as well as departmental meetings and educational sessions
- Orientation/Pharmacy Operations
- Pain Management and Palliative Care Clinical Skills
- Palliative Care
- Neurosciences Pain Resource Team
- Interventional Pain Service
- Acute Pain Service
- Outcomes Research and Drug Policy
- Pediatric Pain Service
- Psychiatry Pain Service
- Pharmacy Administration
- Palliative Care Clinic – 6-12 months
Benefits: Click Here
Staffing: Click Here
On-Call: Click Here
All applications will be accepted through PHORCAS: Click Here
Suzanne Amato Nesbit, PharmD, FCCP, BCPS, CPE
Titles: Clinical Pharmacy Specialist, Pain Management and Palliative Care Research Associate, Department of OncologyCenter for Drug Safety and EffectivenessBloomberg School of Public Health
Education: B. S. Pharmacy, Ohio Northern University, Doctor of Pharmacy, The Ohio State University
Certification: Board Certified Pharmacotherapy Specialist, Certified Pain Educator
Dr. Nesbit is currently on the Palliative Care Service and the Neuroscience Pain Resource Team at The Johns Hopkins Hospital. She is a Clinical Specialist in Pain Management and Palliative Care with the Department of Pharmacy. Dr.
Nesbit holds faculty appointments in the Department of Oncology and the Center for Drug Safety and Effectiveness in the Bloomberg School of Public Health at Johns Hopkins, as well as, the Schools of Pharmacy at University of Maryland and Notre Dame University of Maryland.
She has been practicing in pain management for over 30 years. During her tenure at Johns Hopkins, she has participated in several research protocols and pain initiatives. Dr.
Nesbit has served as Chair of the Pain Management Subcommittee of the Maryland Cancer Plan, Chair of the Pain & Palliative Care PRN of ACCP (American College of Clinical Pharmacy), Chair of the ASHP (American Society of Health-System Pharmacists) Pain and Palliative Care Section Advisory Group, and was appointed to The Joint Commission Technical Advisory Panel for Pain Management in 2016. She served on the Board of Regents for the American College of Clinical Pharmacy (ACCP) from 2012-2015 and elected a Fellow in 2016. She is serving a term as ACCP President (2017-2020) currently. Dr Nesbit is Co-Chair of the Johns Hopkins Hospital Pain Management Committee that is charged with reviewing current pain protocols and making any recommendations for improvements in clinical care and staff education regarding pain management. More recently, she was named Co-Chair of The Johns Hopkins Health System Opioid Stewardship Clinical Community.
Palliative Care Methods for Controlling Pain
Linkedin Pinterest Pain and Palliative Care Palliative Care Pain Management Pain Management Procedures
Palliative care is used to manage a disease or medical condition that is serious or life threatening by easing pain and other associated physical, emotional, or psychosocial symptoms.
Palliative care also eases other distressing symptoms, depression, anxiety, fatigue, insomnia, and shortness of breath. Palliative care provides advanced care planning and a support system to help you live a life that is as active, fulfilling, and as pain-free as possible.
Palliative care may last for weeks, months, or years, and the relief of moderate to severe pain during that time can greatly improve quality of life. The biggest problem with palliative care is that many people are referred for care too late. By starting this type of care early, and by using the right type of pain management, nearly all pain problems can be relieved or reduced.
Principles of palliative care and pain medicine
The first step in managing pain is to do a total pain assessment. You may be asked to choose a number from 0 to 10 to rank your pain, with 0 being very mild pain and 10 being the worst possible pain you could have.
Keep in mind 3 important principles when deciding how to manage pain. First, pain should always be treated right away. A delay allows pain to get worse. Second, you should not be afraid of becoming addicted to pain medicine.
If medicines are used in the right way under close supervision of a healthcare provider, this is rarely a problem. Of course, if you believe that you are losing control of how you are using pain medicines, you should discuss this with your healthcare provider right away.
Third, most pain problems can be controlled by using the World Health Organization's step-care approach:
- Step 1. Start with a nonsteroidal anti-inflammatory drug (NSAID). Examples of NSAIDs include over-the-counter drugs ibuprofen and stronger NSAIDs that your healthcare provider may prescribe. An alternative to NSAIDs for step 1 pain is acetaminophen.
- Step 2. If pain continues or gets worse, your healthcare provider may prescribe a weak opioid medicine, hydrocodone. A weak opioid may be combined with a nonopioid pain reliever.
- Step 3. If pain continues or gets worse, your healthcare provider may prescribe a stronger opiate. Examples of strong opioids include morphine and fentanyl.
Understanding opioid drugs
Opioid drugs are the most effective and commonly used drugs for moderate to severe pain. A wide range of opioid drugs is available, and they can be taken in a variety of ways.
One drawback of these medicines is that, over time, you will almost certainly develop a tolerance to the one you're taking and need higher doses to get the same effect.
One way your healthcare provider may get around this problem is by switching the type, dose, or the way the drug is given.
These are common ways in which opioid drugs can be given:
- Oral medicines. These can be taken in pill or liquid form and can be short acting or long acting (sustained release).
- Adhesive patch. This can be applied to the skin to release medicine over time. An example of this is a fentanyl patch.
- Opioid drug injection. This shot may be given under the skin or into a muscle.
- Opioid drug IV. An opiate may be given directly into the blood through an intravenous line.
- Medicine pump. Opiate medicine can be given through a pump attached to an IV line that you control. This is called patient-controlled analgesia.
- Spinal injection. For pain that's hard to control, a pain-control specialist may give an opioid drug directly into the spinal cord area.
Understanding helper drugs
These medicines, called adjuvant analgesics, can help control pain in certain situations. These are commonly used adjuvant drugs:
- Steroids. These are strong anti-inflammatory medicines that may help relieve pain by decreasing inflammation. They may be used along with other pain relievers for nerve, bone, or other types of pain.
- Antidepressants. Treating any existing depression or anxiety can make pain easier to control. These drugs may also be useful in pain caused by nerve damage.
- Anticonvulsants. These medicines are usually used to control seizures, but they can also help control nerve-related pain.
- Local anesthetics. These are medicines that can block pain signals in the body. A pain specialist may inject a local anesthetic to block pain.
- Muscle relaxants. Antianxiety medicines and muscle relaxants may be used along with pain medicine if pain is aggravated by tension or muscle spasms.
- Bisphosphonates. These medicines are sometimes used to prevent fractures in people whose cancer has spread to the bone. They can play a key role in relieving bone injury and pain.
Other pain control interventions
Surgery is often the last thing a patient or his or her healthcare provider would consider at end of life. But at times surgery can provide pain relief and increase function. Surgery's primary goal can be to relieve specific symptoms. For instance, a healthcare provider may recommend surgery to stabilize a hip fracture in someone with advanced cancer.
The surgery is not going to treat the cancer or lengthen the patient's life, but it may be the best way to reduce hip pain and improve mobility. Radiation therapy can also be used to improve pain and control symptoms. Because surgery involves risk, the healthcare provider must clearly define treatment goals for both the patient and the patient's family.
If you or a loved one needs palliative care, many options are available. Work with your healthcare provider to find the right approach. You can also get help from a pain medicine specialist or a palliative care specialist. Remember: You have a right to be as free of pain as possible. There is no reason to let pain decrease your quality of life.
Palliative Care Questions to Ask Every Advanced Cancer Patient
Despite the proven benefits of early palliative care for oncology patients, integration of palliative care remains a challenge.
[1,2] At Johns Hopkins Medicine, the TEAM approach is being used to improve oncology outcomes by incorporating palliative care in practice for patients with advanced breast cancer.
 TEAM (Time, Education, Assessment, and Management) requires approximately 1 hour of additional time with the patient each month, focused on patient education, assessment, and management.
“It is an extra hour every month, not once. [But] it doesn't have to be done by the doctor. It can be an advanced practice or [other trained] nurse,” said Thomas Smith, MD, director of palliative medicine and professor of oncology at Johns Hopkins. The hour can be spent in person, by phone, or by telemedicine, but it has to be structured and include assessments, he added.
“If clinicians can't spare the time, they need to get palliative care involved,” said Smith, speaking at the 2017 San Antonio Breast Cancer Symposium. He defined palliative care as specialized medical care, providing relief from symptoms, pain, and stress for people with serious illness.
“Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support,” he said. “It is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
The benefits of early palliative care have been firmly established. In 6 of 13 large randomized trials, early outpatient palliative care has been shown to improve survival, and no trials have identified any harms.
[1,4,5,6,7,8,9,10] Early palliative care also decreases costs, with one recent study showing that a new palliative care program at Johns Hopkins saved roughly $3.5 million on health system finances over 1 year.
 Of note, said Smith, other studies have shown that patients who use hospice live a month longer than patients who don't use hospice.[12,13]
“Palliative care alongside usual care, with transition to hospice care when appropriate, is now the accepted best practice,” said Smith, “with all evidence suggesting equal or better quality of life, fewer symptoms, equal or better survival, and less cost, with no harms—except we have to have the discussions, which can be upsetting.”
As far back as 1990, the World Health Organization recommended early palliative care at the time of cancer diagnosis in patients with all stages of cancer. The practice, however, was slow to catch on, and it wasn't until the landmark 2010 study by Temel and colleagues that the long-held belief that palliative care was only for patients with end-stage disease was overturned.
The American Society of Clinical Oncology (ASCO) strongly recommends palliative care for every advanced cancer patient by an interdisciplinary team, concurrent with oncology care, within 8 weeks of diagnosis.
 Smith said oncologists are uniquely situated to help provide palliative care, but there are insufficient data to show that oncologists can do this themselves with time and training obstacles. “Some of us can. Some of us will.
Some of us really need help from a palliative care team,” said Smith.
Refer early and often, unless you can spare an hour a month with each patient.
Smith had several key messages. “Refer early and often, unless you can spare an hour a month with each patient, because that is how much time it takes,” said Smith. “Partner with a palliative care team that you can trust.”
Education is key. Studies have shown that as many as two thirds of people receiving palliative chemotherapy, radiation, or surgery believe that the treatment will cure them.[16,17,18] In terms of assessments, Smith said, clinicians should use standardized assessments of patient-reported outcomes.
These include evaluation of (1) symptoms through tools such as the Edmonton or Memorial Symptom Assessment Scales, (2) spirituality with tools such as the FICA Spiritual History Tool, and (3) psychosocial distress with the Distress Thermometer.
 The Edmonton Symptom Assessment Scale asks patients to rate a number of symptoms on a scale from 1 to 10, including pain, tiredness, drowsiness, nausea, lack of appetite, shortness of breath, depression, anxiety, and well-being.
“If you don't ask these questions, you are not going to figure out what is really bothering your patients,” said Smith. He pointed out that assessments need to be shared with the team so that all caregivers are on the same page.
Novel technologies can be helpful in evaluating patients. In a recent study involving patients receiving routine outpatient chemotherapy, the median overall survival was improved by 5 months in individuals who proactively reported symptoms through a Web-based tool, compared with usual care.
 According to Ethan Basch, MD, MSc, lead author of the study and director of the Cancer Outcomes Research Program at UNC Lineberger Comprehensive Cancer Center, in Chapel Hill, North Carolina, having patients self-report their symptoms online should be considered a part of standard symptom management. “The current standard approach of symptom monitoring is reactive.
We don't systematically elicit symptom information from patients to get to problems early,” said Basch.
Having patients self-report their symptoms online should be considered a part of standard symptom management.
If clinicians want to provide palliative care as it is done in clinical trials, they must include a symptom assessment, spiritual assessment, psychosocial assessment, coping assessment, and goals-of-care discussion, repeated at several points.
During the hour-long palliative care visit, roughly 10% of the time is spent on understanding the illness and roughly 15 minutes is spent on how patients are coping with the disease.
 “In palliative care, it is standard practice to ask, 'How are you coping?' and then turn to the family and say, 'How are you coping with mom being so sick?'” said Smith.
If an oncologist does not have established ties with spiritual care and social work, he or she should establish these relationships for counseling as required.
During palliative care visits, it is important that patients be assessed for how they prefer to receive information, their current understanding of their situation, and whether they have considered any advance care planning.
 Clinicians should frequently check in with patients on two questions: What is your understanding of your situation, and how are you coping? “Those are the two things that I do in my palliative care life that I don't do as much in my breast cancer life,” said Smith.
At each scan, added Smith, clinicians should be asking patients if they would to discuss what the results mean. “That gives them control over the information,” he said. Using open-ended questions such as “What is your understanding of your illness?” can provide the clinician with important information and insight on how patients view their illness.
More attention is also needed to increase patients' awareness of their prognoses; being able to admit potential life-ending illness requires direct communication by the healthcare provider. In a recent study characterizing the nature of discussions of scan results, only 4 of 64 encounters included a frank discussion of prognosis.
 Oncologists spent little time discussing scan results and prognostic implications, in favor of treatment-related talk. “We need to gently correct … prognostic awareness. Being able to admit that it might be 8 months, and not years, is absolutely critical, but it really requires our presence, our knowledge, and our persistence,” said Smith.
To remind clinicians of important palliative care questions, Johns Hopkins has developed a palliative care temporary tattoo with important palliative care questions, including: How do you to get medical information? What is your understanding of your situation? What is important to you? What are you hoping for? Have you thought about a time when you could be sicker and in need of a living will or advanced directive?
“The tattoo stays on for only about 10 days, but making yourself ask those questions will get to the heart of what a palliative care visit does,” said Smith.
Smith said he starts his discussions about advance care planning by saying, “I'm worried about you, and I'm worried about what might happen in the future. I would to talk now about where we are with this breast cancer, etc.
” Goals-of-care conversations led by the oncologist, said Smith, are key to advancing the prognostic awareness of the patient and family, but too frequently they do not occur or are ineffective in leading to advance care planning and appropriate planning for end-of-life care.
Johns Hopkins has developed an electronic medical record–based goals-of-care template for discussions, including several key questions about how patients to get medical information, their understanding of their situation, and what is important to them.
 Clinicians can complete all or parts of the form with patients and use it to ensure full coverage of important tasks, such as planning for transition to hospice and legacy work.
The form can also help with ensuring that all providers are on the same page about treatment plans.
When you order immunotherapy or anytime you order sequencing, you ought to be thinking about immediate referral to palliative care.
Smith said that oncologists should start thinking about transitions to best end-of-life care when they think their patient has 6-12 months to live, to ensure a planned transition to hospice. “When you order immunotherapy or anytime you order sequencing, you ought to be thinking about immediate referral to palliative care and a hospice information visit,” said Smith.
The benefits of having these conversations are many. “Patients who have end-of-life discussions are much more ly to be satisfied with their care, die at their place of choosing, and have markedly less distressed relatives,” said Smith. “In fact, looking at people who use hospice, the survival of their spouse is higher. It is really fascinating.”
Drs Smith and Basch have disclosed no relevant financial relationships.
Medscape Oncology © 2018 WebMD, LLC
Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
Cite this: The Palliative Care Questions to Ask Every Advanced Breast Cancer Patient – Medscape – Apr 25, 2018.
Palliative Care and Pain Program: Johns Hopkins Sidney Kimmel Comprehensive Cancer Center
The Harry J. Duffey Family Pain and Palliative Care Program was founded in 2007 to provide compassionate, supportive care for our patients and families at the Johns Hopkins Kimmel Cancer Center.
Our trained staff can help guide you throughout the cancer process. No matter where you are in your cancer treatment, every day matters.
Please read our Resource, Education, and Support Guide for Advanced Cancers Patients and Their Family Caregivers
Palliative Care Experts
How to contact us:
Ask your doctor, nurse, or other health care provider to contact us
Visit the Duffey Patient and Family Services program in person in Suite 1210, Weinberg Building
What is palliative care?
Palliative (pronounced PAL-lee-uh-tiv) care focuses on the whole person and the relief of symptoms, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, depression and difficulty sleeping.
It can help patients carry on with daily life, including tolerating medical treatments. Palliative care is appropriate at any stage of an illness and can be provided at the same time as your cancer treatment.
American Society of Clinical Oncology Announces new Palliative Care Guidelines
What does the Harry J. Duffey Family Pain and Palliative Care Program at the Johns Hopkins Kimmel Cancer Center offer?
At the Kimmel Cancer Center, we want our patients to be as comfortable as possible during their treatment. Our team provides patients and their families with guidance in making difficult decisions, emotional support, and expert treatment of pain and symptom management.
Palliative care is not a one-size-fits-all approach. Our team will meet with you and your family to discuss options to enhance your care to suit your unique needs.
Meet our new Harry J.
Duffey Family Professor of Palliative Medicine Professor of Oncology and Director of Palliative Medicine
Who will be involved in my care?
The pain and palliative care experts will join with your cancer doctors, nurses and other health care professionals to support you and your family through the cancer journey.
Your team members will be tailored to you and your family’s specific needs.
Your team may include a palliative care doctor, palliative care nurse, social worker, chaplain, pharmacist, nutritionist, physical therapist, and others.
How can we help?
Special Retreats for Patients with Metastatic Cancer
We offer retreats for patients and their loved ones.
There are two retreats annually for metastatic breast cancer patients (one for couples and one for patients who want to bring a female caregiver), metastatic colorectal cancer patients, advanced pancreatic cancer patients, and advanced GYN oncology patients. This video is a look into a retreat offered for metastatic breast cancer patients.
Communication— the cornerstone of palliative care—is key to superb care. The team will help you feel comfortable speaking to your doctors, nurses, family members and other important people in your life.Palliative care benefits both patients and their families. Working in partnership with your primary oncologist, the palliative care team provides:
- Close, clear communication
- Expert treatment of pain and other symptoms
- Help navigating the health care system
- Guidance with difficult decisions and complex information
- Detailed practical information and assistance
- Emotional and spiritual support for you and your family
Whether you need assistance managing physical pain, gaining relief from psychological distress, or want better communication among family members, the Duffey Pain and Palliative Care team can help.
Support from grateful patients and families assures the continuation of our program.
To learn more about ways to give to the Harry J. Duffey Family Pain and Palliative Care Program, please contact us at 410-502-9632.
About the Palliative Medicine Program | Johns Hopkins Medicine, Palliative Medicine
Founded in 2007, the JHH Adult Palliative Medicine Program provides compassionate, supportive care for patients and families receiving treatment from the members of Johns Hopkins Medicine.
Our team of experts supports patients and families throughout their illness, providing them the type of care they need every step of the way. They manage symptoms, set medically appropriate goals and help people make the most of their time. The degree of care is matched to each person's needs and goals toward optimizing quality of life.
The primary goal of our program is to ensure that patients dealing with life-threatening illnesses are as free of pain as possible and have the mental and emotional stability they need to make important life decisions. Most importantly, we want our patients to enjoy their time with family and friends and be able to do the things they want to do.
Working in partnership with a patient’s primary physician and team, the palliative care team provides:
- Expert treatment of pain and other symptoms
- Close, clear communication
- Help navigating the health care system
- Guidance with difficult decisions and complex information
- Detailed practical information and assistance
- Emotional and spiritual support for the patient and family
We want patients and their families to address all the possible options and outcomes and do as much planning as possible, including advance directives. our experience in caring for critically ill patients and their families, we have developed the Johns Hopkins Palliative Care Checklist for Patients.
The checklist provides a list of questions for patients and their families to help ensure that important tasks get done and decisions made.
Taking care of a patient while he or she still feels well and alert will help both patient and family to feel prepared to deal with the effects of the illness and its treatment.
In addition to your primary care team, palliative care team members will work with you and your family as needed. Our expert team includes palliative care physicians, advance practice providers, nurses, social workers, chaplains, and pharmacists.
If you or a family member is admitted in the hospital, ask your primary physician and team to request a consult on your behalf.
If you or a family member is at home or in the community and would to see us in our outpatient clinic, ask your health care provider to place a referral on your behalf. A physician order is needed to make an appointment. Health care providers can call 410-955-8305 for additional information.
The Harriet Lane Compassionate Care program specializes in the care of children with life-limiting or terminal conditions and their families.
As with adults receiving palliative care, children receive pain and symptom control as well as psychosocial and spiritual support. Their families receive the same psychosocial and spiritual support.
In addition, palliative care experts work with the patients and their families on advanced care planning and provide bereavement care.
Program staff members have developed a new model for pediatric palliative care, which:
- Integrates palliative care into pediatrics from diagnosis onward.
- Educates residents, trains palliative care specialists and teaches pediatric care providers to identify palliative care needs.
- Incorporates research into clinical care to continuously improve palliative efforts.