How to provide better end-of-life care

Hospice director Cleanne Cass, DO, is continually astounded by the strength and determination of patients who likely have six months or less to live.

“I recently had a patient with cancer of the gallbladder. And his way of coping with his illness and the only thing that made him happy was to play golf,” says Dr. Cass, the director of community care and education for Hospice of Dayton (Ohio). “So he was playing golf with his brother up until a week before he died. The last couple of times, he had to be helped on and off the cart, but he still got satisfaction from being out there.”

That patient had some physical pain, which the golf outings may have exacerbated. But giving up golfing with his brother would’ve caused him even greater suffering, Dr. Cass notes.

Hospice and palliative medicine physicians often uncover patients’ most profound fears and sources of distress. To help patients cope, they devise individualized plans of care. They must get to know patients intimately to do this, understanding each patient’s pain and learning what alleviates it.

“Palliative care involves looking at what is causing the experience of pain and what is causing the person to suffer, which can be far more than just physical pain,” says Amy L. Davis, DO, a palliative medicine specialist in Bryn Mawr, Pa.

When managing pain and other symptoms in dying patients, DOs may use gentle osteopathic manipulative treatment techniques when appropriate in addition to a variety of medications, Dr. Davis says.

In caring for patients who have been certified for hospice, physicians have a large, time-tested formulary at their disposal that includes pain medications, steroids, anti-nausea medicines and drugs used off-label to address specific symptoms such as loss of appetite, shortness of breath, anxiety and fatigue.

“Although we have a toolbox of medications that we may reach for to control pain and other symptoms, every patient’s situation is unique,” says Ruth Thomson, DO, the chief medical officer for Hospice of Dayton. “We don’t use a standard drug regimen for every patient.”

The physician’s role in caring for the terminally ill is to assess and frequently reassess the patient’s symptoms and determine the best treatment plan for that patient at that point in the disease process, Dr. Thomson says.

Several prominent DO palliative medicine specialists share the techniques they use to do this for their patients and offer advice for physicians inexperienced in end-of-life care.

How to assess a patient’s pain

A British nurse and social worker who eventually became a physician, Dame Cicely Saunders founded the modern hospice movement in England in the mid-20th century. Having witnessed much suffering in terminally ill patients, she championed the need for effective palliative care. She emphasized the importance of addressing what she termed “total pain,” a concept commonly expressed in medical literature by the acronym P-A-I-N:

• Physical noxious stimuli.
• Affect or emotional discomfort.
• Interpersonal conflicts.
• Nonacceptance of one’s own dying.

Assessing total pain involves much more than asking patients to rate their pain intensity on a scale of zero to 10, palliative medicine physicians insist.

“It’s not just the patient saying ‘I have pain at this number’ and the physician prescribing a pill for it,” says Dr. Davis. She uses a variety of methods to reveal a complete picture of the patient’s suffering, beginning with a comprehensive history and physical examination. In addition to asking open-ended questions about physical pain and other symptoms, she surveys patients on the role of spirituality in their lives and the psychosocial issues they may be dealing with, such as financial problems and familial discord.

“I observe patients’ body language as well as what they’re saying,” Dr. Davis says, noting that stoic or very weak patients may leave much unsaid.

Then she conducts a physical exam that is as thorough as possible for that patient. “This can be challenging with terminally ill patients,” she says, “because we can’t always do the same maneuvers that we could on people who are healthier and fitter, which might have given us a more definitive answer as to the pathology. Sometimes we have to be a bit more general in our assessment because we just can’t get so specific—the body can’t handle it.”

Nevertheless, well-trained as an osteopathic physician in palpatory diagnosis, Dr. Davis says she gleans a lot of information from gentle palpation.

Dr. Thomson asks patients to describe their pain, providing examples. Is it a dull, achy pain? Does it come and go? Is it more of a sharp, stabbing pain or a burning pain? Is there a pins-and-needles sensation?

“You may need to give them some clues so they can home in on it,” Dr. Thomson explains. “Patients often have a hard time putting words around their pain.”

The commonly used zero-to-10 pain scale can be helpful in ascertaining whether a patient’s pain has diminished or increased as the result of medication or disease progression, Dr. Thomson says. But the scale is too subjective to be the only gauge of someone’s distress, she notes.

“One patient’s five may be severe pain, whereas another patient’s five may be nominal pain that is acceptable to him or her,” she says. “That’s the challenge with using a pain scale. When you apply it globally, it’s not necessarily as meaningful as when you apply it to each individual person.”

Assessing total pain in dying children can be especially challenging. Parents speaking on behalf of their young kids may be expressing their own grief, says Jimmie P. Leleszi, DO, a contributor to the 2005 palliative medicine supplement published by The Journal of the American Osteopathic Association.

“When parents are complaining about a child’s pain, you have to ask yourself ‘Whose pain is it? Is it the pain of the child or is it the pain of the parents?’ ” says Dr. Leleszi, a palliative medicine expert in Detroit.

Dr. Leleszi knows from experience which diseases afflicting children cause the most physical pain. “If it’s leukemia, you’re not going to have much physical pain,” he says. “If it’s a solid tumor, you would have a lot of pain. So the type of entity will tell you what level of pain to expect.”

Both children and adults are individualistic when it comes to which symptoms they can stand and which are unbearable.

“We have different triggers—different things we can tolerate and different things that we can’t,” observes Dr. Thomson. “That goes back to our individual nature. Some patients can tolerate pain, but if they’re nauseated, they can’t stand it. Others can’t tolerate itching.”

These quality-of-life priorities should be identified when establishing the goals of care, Dr. Davis notes. “For some patients, getting rid of pain at all costs is the most important goal,” she says. “Other patients may say, ‘I’d like to remain focused and alert for as long as possible. I can tolerate some pain.’ “

Comfort care toolbox

Patients who elect hospice care have chosen to forgo aggressive interventions, notes Dr. Cass. “In hospice, our goals are directed toward comfort rather than cure,” she says.

Most palliative medicine specialists follow the World Health Organization’s guidelines for symptom management in end-of-life care, Dr. Thomson says. The WHO urges physicians to take a stepwise approach when prescribing nonopioid and opioid analgesics. The starting point depends on the nature and intensity of the patient’s physical pain.

“For cancer patients, we might completely bypass the bottom rung of the ladder because their pain is significant at the beginning and nonopioid analgesics may not be helpful,” Dr. Thomson says. “But for geriatric patients dying from Alzheimer’s disease who are having arthritic pain, we might start with acetaminophen or ibuprofen and work up from there.”

For patients with moderate to severe physical pain, consider using a long-acting opioid to control ongoing pain and a short-acting opioid for “breakthrough” pain, Dr. Thomson advises.

Although opioid addiction is a nationwide problem, “there typically are not concerns that patients will become addicted to opioids prescribed for pain and symptom management while under hospice care,” Dr. Thomson says. “Nevertheless, hospice programs are sometimes challenged by caring for patients with a previous history of addiction and by drug diversion, in which patients or their family members sell the medications.”

Hospice of Dayton provides upfront education on opioid abuse to all patients and their families, Dr. Thomson says. The hospice outlines its expectations for opioid use and the consequences patients will face if the expectations are not met. Then, patients and their families sign agreements stating that they will commit to the safe use of opioids.

Opioids should be prescribed judiciously and aren’t the best medicine for all types of severe pain, says Jules Sherman, DO, Hospice of Dayton’s senior medical director.

“People who have bone metastases from cancer very often respond better to nonsteroidal anti-inflammatory drugs [NSAIDs] than they do to opioids,” Dr. Sherman says. Corticosteroids such as prednisone or dexamethasone can also alleviate bone pain.

In addition, opioids don’t work well for nerve pain, attests Dr. Sherman.

When Dr. Sherman sees a patient with pancreatic cancer, for example, he will use an opioid to get the patient’s typically significant pain under control. However, because pancreatic tumors tend to invade the celiac plexus nerves in the back, he will add a second medication such as an anticonvulsant to address the neuropathic pain. The combination of those two drugs will work better than either one alone, he says.

Early in the dying process, when a patient can still swallow and move about, Dr. Cass will usually start by prescribing a short-acting opioid, such as Vicodin or Percocet, for moderate pain. For patients who have difficulty swallowing, morphine or hydromorphone liquid formulations can be administered sublingually or injected subcutaneously or intravenously. Transdermal fentanyl patches are another option.

For patients who have severe, unremitting pain from multiple sources, Dr. Thomson may recommend methadone, which is a much stronger opioid than morphine.

“Typically, we use methadone for patients who’ve been on incrementally increased doses of standard opioids, such as long-acting morphine or fentanyl patches, but have worsening pain with the progression of their disease,” Dr. Thomson says. “Methadone is our go-to medicine for patients with pain that is more difficult to manage and for more complex pain.”

But because of its unique pharmacokinetic and pharmacodynamic profiles, methadone must be prescribed even more cautiously than other opioids to avoid overdose or excessive sedation, she warns.

To determine the best analgesic dose for a patient, palliative medicine physicians commonly use a technique called “dose finding,” Dr. Cass says.

“We generally start with the very lowest dose that’s available and then let the patient take the number of doses that they need in a day to get relief,” she explains. “After two days, we see how much the patient is taking each day and that amount becomes their total daily dose. So we titrate the dose to the patient’s level of comfort.”

As the disease progresses, the dose is often increased or the medication changed. “We are constantly reviewing patients’ medication regimens to make sure we’re keeping up with their needs,” Dr. Cass says.

When incrementally higher doses of an analgesic fail to relieve a patient’s pain, it’s time to rotate to a different medication, Dr. Sherman says.

In selecting which medications to try on patients with specific conditions and symptoms, Dr. Sherman relies on his many years of experience. Yet he is quick to admit that he can never predict an individual’s response.

“If I have 100 patients in front of me with the same disease and the same complaint of pain, each person will respond a little differently if I use a particular opioid,” he notes. “The same is true for NSAIDs. It’s always good to have a few drugs of the same class available, so you can cross over from one to another if the patient isn’t getting sufficient relief.”

Beyond pain

To address nonpain symptoms in the terminally ill, physicians also have many medications to choose from.

For example, haloperidol, an antipsychotic medication, can be very effective in reducing nausea and vomiting, Dr. Thomson points out.

While opioids and corticosteroids alleviate shortness of breath as well as pain, she will often prescribe an anxiolytic drug, such as lorazepam or alprazolam, in low doses to help curb the anxiety that commonly accompanies dyspnea.

“When patients have heart failure, chronic obstructive pulmonary disease or lung cancer, their lungs and heart are compromised, so they get winded easily doing basic activities such as walking to the bathroom,” Dr. Thomson says. “When they start breathing heavily, they may become anxious, which exacerbates the feeling of breathlessness.”

Fatigue is a common symptom of cancer, heart failure, COPD and many other diseases, as well as a side effect of opioid medications. Dr. Leleszi sometimes uses methylphenidate intermittently to raise the energy level of patients so they can interact with loved ones and have a better quality of life.

“I like to use Daytrana patches with my hospice patients,” he says. “If a grandmother who is bedridden and very tired is going to be visited by family at 2 p.m., I may ask a nurse to apply a transdermal methylphenidate patch an hour beforehand. The patient doesn’t have to swallow a pill or get a shot. And during her interaction with family, she’s more alert and focused. After her family leaves, you just take the patch off and the medication is out of her system.”

Dr. Thomson notes that methylphenidate can also be used to alleviate depression in patients near the end of life. “Typical antidepressants, such as the selective serotonin reuptake inhibitors, take weeks to fully kick in and be effective,” she says. “A lot of our patients may not have that amount of time.”

Constipation, a side effect of opioids and a pervasive symptom among patients who are immobile from advanced disease, should be addressed prophylactically, Dr. Sherman maintains.

“When you start patients on an opioid, you should also start them on one or more stool softeners to counteract what you know will happen,” he says. “You don’t want to wait until they become severely constipated.”

Although polypharmacy is the norm in hospice care, physicians mustn’t lose sight of the other aspects of a patient’s well-being, Dr. Davis points out. A team-based approach to care, in which a physician consults frequently with other clinicians, social workers and chaplains, often works best for the patient, she says.

Dr. Davis has found OMT to be a useful natural tool in end-of-life care.

“Some of the lymphatic drainage techniques, for example, can be extremely helpful for a variety of conditions because the patients aren’t moving anymore or they have an underlying condition that is compromising their lymphatic system,” she says.

Patients at the end of life may also benefit from psychological or pastoral counseling, meditation and music therapy, Dr. Davis notes.

Being there for patients

In addition to handling patients’ medical needs, Dr. Cass often helps fulfill patients’ final wishes.

“A father will want to remain alive to attend his daughter’s wedding or his son’s high school graduation. When we know that won’t be likely, we can suggest and facilitate alternative scenarios,” she says. “Maybe we can bring the daughter’s wedding up a month or arrange for the high school principal to present the son’s diploma at the dad’s bedside.”

Nearly all physicians will encounter patients whose lives are ending, and medical educators need to do a better job of training physicians to provide palliative care, Dr. Cass contends.

Hospice of Dayton takes fourth-year students from the Ohio University-Heritage College of Osteopathic Medicine in Athens on rotation, as well as family medicine residents and oncology fellows.

“We’re trying to help young physicians realize that this is part of the care they will need to provide in their career and that they will receive satisfaction from it,” Dr. Cass says. “So instead of saying to the patient ‘There is nothing more I can do,’ they will say, ‘I will help you with this final challenge. I will be there for you. I will be your doctor. Hospice will help me.’

“One of the worst things for patients is to feel like their doctor abandoned them.”

Palliative medicine focuses on relieving suffering and allowing patients to determine how they will spend their final months, weeks, days and hours.

“The goal of hospice care,” says Dr. Cass, “is to help patients to live every moment until they die.”