Palliative and Supportive Care at the End of Life: Reducing Suffering, Enhancing Meaning, and Improving the Quality of Life

October 2021 Vol 12, No 10

Categories:

Quality of Life

Improving patient conversations improves patient care and helps to close the gap between what patients want and what they get, particularly at the end of life, according to Gabriel Ghanoum, PsyD, affiliated assistant professor at the University of Miami School of Medicine.

“We can’t always cure, but we can reduce suffering,” he said at the AONN+ Virtual Midyear Conference. “And most of the time, at the end of life, conversations are too little, too late, and not too great.”

Palliative and Goal-Directed Care

When palliative care is integrated into a patient’s cancer care early, it improves quality of life, decreases symptom burden and caregiver distress, and may even improve overall survival.

According to the Last Acts Precepts of Palliative Care, “palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms, and restoration of functional capacity while remaining sensitive to the personal, cultural, and religious values, beliefs, and practices.”

At the end of life, one of the most important aspects of palliative care is establishing a patient’s goals of care, as these often are not made clear. Focusing on goal-directed care, as opposed to purely disease-focused care/treatment, lets patients feel heard and respected. “Palliative care is really about preserving the dignity and the essence of the human being,” he said.

When a person is living with a serious illness, having earlier conversations about their goals and priorities enhances goal-concordant care, improves their quality of life and well-being, reduces their suffering, and leads to better patient and family satisfaction.

According to Dr Ghanoum, the provider should look at the family and patient as a constellation, considering the patient’s experience of illness (ie, symptoms, suffering), the details of their illness (natural status, medical options, nearness of death), and the patient as a person (wishes, goals, plans, hopes), before formulating goals of care together. After careful consideration of all of those factors, various treatment plans that are consistent with the patient’s goals should be considered, weighing burdens versus benefits.

“It’s very important to align the goals of care of the patient/family with those of the medical team,” he said. “The absence of alignment is alienation, and that increases pain and suffering.”

Assessing Sources of Pain

Making a compassionate inquiry into a patient’s symptoms and suffering should take into account any imbalances that are biological (eg, fatigue), psychological (eg, depression, anxiety), social (eg, difficulty relating with others), and spiritual (eg, loss of meaning).

“All of these things can really destabilize the homeostasis of a person, so we have to be comfortable with emotion, without being triggered by emotion, in order to open the pathway and see what is distressing for the patient,” he said. “We often practice avoidance, but we need to validate and give the patient permission to feel every feeling and every emotion.”

Having conversations about the patient’s source of distress is necessary to evaluate, respond, triage appropriately, and calling in members of the multidisciplinary team (eg, a psychologist, a social worker, or a pain management specialist) when necessary.

According to Dr Ghanoum, pain is a subjective sensation, and there is no truly objective method for measuring it; therefore, understanding the multidimensional components of pain is integral to the assessment process. A biopsychosocial existential distress screening should be conducted in addition to a pain assessment to address any aspects that might be contributing to pain that are not expressed to the healthcare team through the pain assessment tool.

Distress should be monitored continuously along with the patient’s pain level, so a distress screening should be conducted during every patient visit.

“The 2 approaches are both necessary and complementary in assessing and treating the patient’s experience of pain,” he said. “The patient’s mind, body, and spirit are interconnected, so whether pain originates in the mind, body, or spirit, all 3 dimensions can be affected.”

“To Care Is to Be Aware”

Improving conversations with patients is not a complicated process. If a patient asks when she can expect her MRI results, simply telling her “I don’t know” will only increase her suffering.

“But if we become mindful of the needs of the patient, knowing that she is waiting and has hopes to hear from the healthcare provider, we can instead say, ‘We have not received them yet; however, we are working on it, and as soon as they come in, I will be the first to come to you,’” he said. “This gives the patient a sense of assurance that you have her best interest in mind.”

To care is to be aware, he added, aware that this person is suffering. Communication should be “with” the patient, not “at” the patient.

Approaching End-of-Life Conversations

According to Dr Ghanoum, the ideal time to introduce a discussion of values and goals is when the patient is relatively stable and not in a medical or emotional crisis.

“You will not harm your patient by talking about end-of-life issues,” he said. “Patients want the truth about their prognosis.”

Anxiety is normal for both the patient and the clinician during these discussions, but the conversation should be titrated depending on the patient’s responses (especially anxiety).

Dr Ghanoum stressed the fact that patients have goals and priorities besides living longer, and learning about them empowers their providers to provide better care. Expressing their fears and worries is therapeutic for patients, and they should be given a safe place to do that.

He pointed out some general rules to follow when having these conversations with patients:

DO:

  • Give a direct, honest prognosis when desired by the patient
  • Present prognostic information as a range
  • Allow for silence
  • Acknowledge and explore emotions
  • Focus on the patient’s quality of life, fears, concerns
  • Make a recommendation: “Based on XX medical situation, YY treatment options, and ZZ important goals and values, I recommend...”
  • Document the conversation

DO NOT:

  • Talk more than half the time
  • Fear silence
  • Give premature reassurance
  • Provide factual information in response to strong emotions
  • Focus on medical procedures

Finally, keep in mind that this is a collaborative process that is emotional for both the patient and the clinician, he added. The provider should also recognize that cultural nuances do exist and should always allow sufficient time for these conversations.

The Serious Illness Conversation Guide uses a simple and practical format for approaching these difficult discussions (Figure). Through proven language, it helps to ensure a meaningful and successful conversation with patients, according to Dr Ghanoum.

“It helps us to see beneath solely the diagnosis and prognosis,” he said.

Use the wish/worry/wonder framework, he advised, as this approach is gentle but assertive: “I wish we could slow down or stop the growth of your cancer, and I promise that I will continue to look for options that could work best for you. But, I worry that you and your family won’t be prepared if things don’t go as we hope. I wonder if we can discuss a plan B today.”

“This is an ongoing conversation,” he said. “It can take a couple of days in order to build a rapport toward not only addressing quality of life and goals of care, but also preserving the patient’s dignity and the legacy they’ll be leaving behind.”

Last modified: January 11, 2022

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