Palliative Care: Dying With Dignity

Palliative care helps patients and families cope with the spiritual, emotional, and physical pain and suffering of terminal illness and end of life issues.

By Thomas G. Ciccone

Interview with Mary Lynn McPherson, PharmD, and Russell Portenoy, MD

When Mary Lynn McPherson, PharmD, BCPS, CPE, heard that a 50-year-old hospice patient needed advice about taking on an opioid with his medication regimen, she went to see how she could help. She was surprised to find out the man actually lived pretty close to her.

Diagnosed with amyotrophic lateral sclerosis (ALS), he was concerned about starting on a new opioid regimen. Would he have to deal with constipation? It was certainly a possibility, Dr. McPherson told him. However, there were medications available to treat the constipation. So after hearing the facts, he decided to give the opioid a try.

For a patient faced with a tough diagnosis and a limited life span, such hard decisions are all too common. For Dr. McPherson, a consultant pharmacist for palliative and hospice care programs, it’s just one example of how the discipline can make a difference in helping terminally ill patients make informed decisions, whilst ensuring that pain and symptom management are a top priority, especially during their last days of life.

Dr. McPherson said this strategy is sometimes referred to as “aggressive palliative care,” where “we aren’t just aggressive at managing pain and symptoms—we also are equally diligent about helping patients and their families cope with spiritual suffering and all of the other emotional issues that arise during a patient’s final days.”

Focused on Comfort, Not Cure

Palliative medicine is a board-certified subspecialty of over 10 specialties (including internal medicine, family medicine, neurology, physiatry, emergency medicine, radiology, anesthesiology, surgery, pediatrics, OB/GYN, and others) that can be delivered on both an inpatient and outpatient basis. The discipline is concerned not with providing cures but with providing comfort, improving the quality of life of patients while also informing and supporting the families. And those services are most effective when they are provided in a collaborative fashion, noted Dr. McPherson, who is a professor and vice chair for the department of pharmacy practice and science at the University of Maryland in Baltimore, Maryland.

In fact, in many ways, palliative and hospice medicine are not only “interprofessional by definition,” they are also transdisciplinary in practice, she explained (see Sidebar). “I always tell my hospice nurses, ‘I’m going to make you all 10% pharmacists and I’m going to be 10% social worker, so we really do a lot of cross coverage. It really does take a village to get this done.”

Given the complexities of multidisciplinary care, some challenges are inherent. Just keeping the lines of communication open amongst professionals is a constant priority, especially when new treatment decisions must be made, Dr. McPherson noted. When patients first enter the hospice setting, they often feel more comfortable sticking with their primary care physician. In such instances, hospice nurses typically end up consulting the resident hospice physician on various matters that come up and then relaying that communication to the patient’s own primary physician, she explained.

Yet even with constant communication, there can be times when a patient is not getting the most optimal relief from his or her condition. When a patient’s outlook becomes increasingly dire, palliative medicine becomes ever more essential, and sometimes, the palliative approach to treating a patient may mean making some difficult decisions in concert with the patient and family.

“Everybody wants a miracle, and medical miracles are amazing when they happen, but they’re just not that thick on the ground,” noted Dr. McPherson. Sadly, palliative care professionals often are the ones who have to break the bad news to the patients and families. End of life (EOL) discussions can be difficult for physicians to have, but they’re incredibly important for securing the future health care strategy for the patient—something palliative professionals are highly trained to discuss competently, Dr. McPherson pointed out.

“Nobody wants to admit it; death is like a defeat to a lot of people,” she added. However, once patients are aware of their situation, it enhances their palliative options, which can make a real difference in outcomes, she noted. Patients value an open line of communication with their health care provider and typically express a desire for using shared decision-making when it comes to future treatment options.1

Reducing the burden of serious illness by relieving pain and symptom distress is a core precept of palliative care, noted Russell Portenoy, MD, Chief Medical Officer at MJHS Hospice and Palliative Care and Executive Director of the MJHS Institute for Innovation in Palliative Care in New York City. “The best practice to follow is one that implements one or more treatments that aim to optimize the balance between pain relief and side effects, as informed by the patient’s goals of care and medical condition. When life expectancy is short, many patients opt for comfort even if the safest and most effective therapy—opioid-based analgesic drug therapy—is associated with the side effects of somnolence or cognitive impairment,” he noted.

Even at this phase of life, patients may seek pain relief without the experience of side effects that compromise function. When this is the case, routine opioid-based analgesic drug therapy may work well, but if not, any of a variety of alternative non-drug approaches, including interventions, may be appropriate.

“In short, professionals who are treating patients with serious or life-threatening illness always should aggressively manage pain, but the specific decisions about the most appropriate treatment should be based on a careful assessment of many complex factors,” said Dr. Portenoy, who is also professor of neurology at Albert Einstein College of Medicine.

“It is certainly possible to unintentionally increase the burden of illness when trying to lessen it by aggressively treating a symptom or other problem,” noted Dr. Portenoy. However, competent palliative care re-assesses the sources of burden and modifies the treatment strategies so that the net result is beneficial, he noted. “Careful assessment and caution when implementing therapy for the medically fragile are the best approaches for avoiding even unintentional serious adverse effects.”

Checking Polypharmacy in End-of-Life Care

With 30 years of experience in palliative and hospice medicine, Dr. McPherson has designed her own critical thinking process for designing appropriate drug regimens for EOL patients. Sometimes, patients do need help weighing the benefits with the burdens of their treatments, she said, especially if their prognosis is negative.

“The best thing that you can do is to educate the patient. Let’s get back to the point of, ‘What are the goals of care?’ What does the patient want at this point?’ If the patient wants comfort measures, and they realize a cure is not really possible, then maybe we need to rethink, for example, whether an aggressive, potentially toxic prescribed medicine is really needed,” she noted.

For some practitioners, it could be an understandably unpopular decision to take a patient off a drug that has been shown in some cases to be potentially curative. However, patients with advanced illnesses can end up with an unnecessary burden of polypharmacy, where a high number of their medications are treating non-life-threatening comorbidities and causing avoidable adverse effects in the process.2

Major studies have shown that when EOL patients have access to effective palliative care throughout their course of treatment, “more effective decisions can be made about when to stop aggressive therapies when the burden exceeds the benefit,” Dr. McPherson said. “Patients actually live longer [and] feel better, because sometimes the interventions we use in these settings are so toxic that they may in fact prematurely end someone’s life.”

It is important to define and understand the nature of the tensions that exist, agreed Dr. Portenoy. “Usually, the tension is about disease modifying therapies, which hold some hope for prolonging life and sometimes improving the quality of life, but also sometimes carry a high associated burden of side effects and risks,” he noted. Dr. Portenoy agrees with Dr. McPherson, a core precept of palliative care is repeated goal setting that considers the medical realities (ie, benefit versus toxicity or other burden) and are informed by the patient’s values and preferences. “If patients and their families are given the opportunity to have discussions with a trusted professional that consider all these factors, then this challenge can be met in a way that supports the patient and family through a difficult time,” he added.

One contentious issue surrounding this topic is the use of HMG-CoA reductase inhibitors, typically referred to as ‘statins,’ for the prevention of stroke and other cardiovascular events in EOL patients. Current guidelines recommend that patients manifesting ischemia or who are at high risk for the disease should be taking statins because studies have shown that the drugs reduce all-cause mortality.3,4

However, a recent large randomised control study found that the actual survival gains of taking statins could be “surprisingly small.” The researchers found the highest postponement of all-cause mortality peaked at 27 days, and this was specifically for patients who had an average of 5.8 years on simvastatin therapy for their unstable angina or myocardial infarction.5

If a patient is nearing the final weeks of his or her life, the researchers strongly suggested that statins should be stopped. Taking a statin to prevent heart attack may not be the best route, they noted, especially if the statin is causing unpleasant side effects, like muscular problems. In such a case, removing the statin from the patient’s drug regimen could improve the patient’s quality of life (QOL) and perhaps make their medical care more cost-effective.6

“Every medication has to have a therapeutic goal. So you have to ask the question, ‘Are we achieving that goal with this drug?’” Dr. McPherson said. Another example can be found in female hospice patients taking alendronic acid (Fosamax) for their comorbid osteoporosis, she noted. Known to irritate the upper gastro-intestinal mucosa and even cause stomach ulcers,7 the medication can come with significant burdens for someone who is dying or in a compromised state. Having to take the drug, remain upright, drink water, and then fast for hours before breakfast in order to avoid gastroesophageal reflux as recommended in the Package Insert may be a routine the patient wants to avoid, altogether. Or, it may be a routine they simply can’t manage at a certain stage in their illness, realistically.

The drug also is known to cause generalized muscle, joint, and bone pain and possibly increase the risk for gastrointestinal toxicity when combined with non-steroidal anti-inflammatory drugs (NSAID).7 A patient with cancer or who is receiving chemotherapy can experience painful bone, or osteonecrosis.8 Getting a patient the best palliative care, including the best pain management, may mean reevaluating the necessity of such a drug, something that requires clear, honest communication between the patient and his or her health care provider.

“I provide the facts and I say, ‘May I share my opinion with you?’ And people are smart, they get it…I despise it when people ‘should’ on me. No one likes it when people say, ‘You should do this, you should do that.’ But I’m also a believer in free will. I’m going to give you the facts, I’m going to share with you my opinion, and then you’re going to make up your mind.”

Setting Up an End-of-Life Plan for Interventions

Those one-on-one conversations between the palliative care professional and the patient can be difficult. For example, hospice patients with dementia may not be able to communicate clearly and speak for themselves, in which case palliative care professionals do often have to turn to the family of the patient to determine the next step.

“Somebody has to make some tough decisions,” said Dr. McPherson, “so if you have dementia and you’re on all those drugs for dementia, but they’re not helping you, it’s hard to have that conversation with the patient, or more likely the family, because that drug’s the only thing there is, so the family might say, ‘What do you mean you’re going to stop this drug?’”

Advance care planning is one of the most important conversations to be had when a patient is approaching EOL, noted Dr. McPherson. “Honoring a patient’s personal beliefs or religious values and establishing what treatment options he or she prefers in EOL scenarios is an integral aspect of mapping a patient’s goals of care and providing the best possible palliative approach.”

These discussions are different with every patient—or if the patient is unable to communicate, the patient’s medical decision maker—which is usually a family member or designated surrogate. It is what makes Physician Orders for Life-Sustaining Treatments (POLST) (aka Medical Orders for Life-Sustaining Treatments [MOLST]), significant tools for establishing the patient’s treatment preferences, so they can pass away with dignity.9 While not every state requires these forms, practitioners typically support their usage because they provide an actionable plan for emergency care and help prevent unwanted, extraordinary treatment.

Where is Palliative Care Heading?

Palliative medicine continues to grow and develop considerably in the United States, and it can be considered a relatively young specialty, having become board-certified in 2006 as a sub-specialty of internal medicine. Over the years, interest in palliative care has surged. In fact, today, many American hospitals feature their own palliative care programs, which tend to quickly swell up in demand as soon as they are established.

Because of this increased interest, there is a growing need for more personnel to enter the palliative care field. “I do think we have a dearth of palliative care practitioners now,” Dr. McPherson said. Palliative teams are in constant need of more help, she stressed. Medical directors and physicians who are working for or with hospices can become board certified, referred to as an HMDCB.10

When palliative care teams are fully staffed, the resulting interventions are much more effective at shortening the gap of time between a patient being diagnosed with a serious illness and getting the palliative consultation they need.11 Researchers are finding this to be a prevalent issue with various patient groups, which may not be getting the proper palliative care they require in a timely manner.

HIV patients in urban hospital settings have limited access to palliative and hospice care. For the very few that do enter a hospice program, they die only days later, which suggests these patients need to be identified and treated earlier in their disease.12 The same issue appears in children diagnosed with aggressive cancer, who are not receiving pediatric palliative care (PPC) as quickly as warranted. Researchers now assert that integrating children quickly into palliative treatment is essential for providing a competent holistic approach to their health care.13

On a more positive note, there has been a fruitful relationship forming between palliative and hospice care teams. As a result, the process of transferring a patient from a palliative to a hospice setting is becoming more seamless and intuitive. “We are seeing very strong alliances formed between hospice and palliative care, [and] thank goodness that palliative care will take drugs or dosage formulations that are user friendly and can be used by the patient, like an oral solution (not using the injectables), and they’re cost-effective for the hospice.”

Evidence-based practice is also becoming stronger in the palliative field. Every month, a bevy of new research into palliative topics is published, so much research that Dr. McPherson noted many professionals probably will have trouble keeping up with it all. Of course, there are natural challenges to continuing conducting well-designed palliative investigations. Some doctors become gatekeepers, and may feel that the research uses too vulnerable a patient population or even is detrimental to their well being. Such attitudes can be a hindrance to palliative care research.14

As the literature continues to grow, palliative care professionals can employ more clinical evidence to support their treatment decisions, Dr. McPherson noted. As essential as it may seem, there was a time when scant research even supported the cost-effectiveness of palliative care. Now, a wide range of peer-reviewed original investigations show that inpatient palliative care (IPC) lowers health care costs, reduces readmission rates, and improves patient satisfaction.15,16

“There has been such an explosion in the research on the appropriate usage of interventions on people with a life-limiting illness,” Dr. McPherson said. “When you consider that hospice and palliative care is about 40 years old, relative to the field of internal medicine, which is about 3,000 years old, it’s just amazing where we’ve come from and where we are now.”

Pioneering Palliative Approaches to Care

Palliative care professionals are continuing to develop novel techniques to improve and broaden the range of services offered to patients with advanced illnesses. For instance, researchers have been exploring the effects of music as a form of pain therapy for patients with cancer and have been finding positive results when music is included with analgesic therapy.17,18

However, music may not be the only creative medium worth offering to palliative and hospice patients. For the last 9 years, the not-for-profit MJHS Hospice and Palliative Care organization in New York City, has run an Art & Soul™ Creative Arts Therapy program, where patients, family members, and friends can participate in art and music programs led by trained music and art therapists. The program includes painting, storytelling, or just listening to music, and has been shown to reduce pain, anxiety, and emotional distress and improve QOL.19 These types of programs can be found in most palliative care centers, Dr. McPherson noted.

Language barriers are another relevant issue palliative care professionals face when treating a patient whose native tongue is not English. This can make basic communication significantly difficult to achieve during sensitive EOL discussions between a patient and caregiver, in part because some languages such as Spanish don’t have clear translations of words like “hospice.”

Now, palliative care teams are beginning to integrate professional medical interpreters to improve communications with limited English proficiency (LEP) patients. This strategy can make a difference, because patients who are counseled with the help of such interpreters become better informed about their symptoms and are better able to make treatment decisions that are aligned with sound palliative care goals.20

Many of these new developments in palliative care have a common thread: providing the best possible support by not only using established end-of-life care techniques, but also taking that extra step to help the patients and caregivers cope with even the basic challenges of everyday life. Dr. McPherson described going so far as to teach a woman how to balance a checkbook, so her ailing husband could rest a little easier.

And perhaps it is this “get-it-done” attitude that makes palliative care professionals such valuable assets to the medical field. Doctors who are exposed to the benefits of palliative care are beginning to experience a shift in how they view patients; they are beginning to appreciate the benefits of providing a more relational, versus, a transactional, approach to care.21

For Dr. McPherson, those relationships seem to be the most rewarding part of her job—the experiences she has had with the people she has helped, and the humility they have given her through her 30 years in the practice. “It’s the most humbling, gratifying job—I’ve done many, many things in the field of pharmacy and this takes the cake. People say they want to go into health care because they want to make a difference. I make a difference every single day.”

Dr. Portenoy agrees: “My job now focuses on the development of innovative programs in palliative care, the implementation of a high quality hospice program, education and training in palliative care, and clinical research. All these aspects are extremely gratifying.”

 

References

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