Having open discussions about end-of-life care is crucial for patients facing life-threatening illnesses and their families. Research has shown that these conversations not only enhance the quality of care in the final weeks of life but can also lead to reduced healthcare costs. End-of-life care is essential for ensuring that individuals can transition with comfort and dignity. It emphasizes the importance of managing symptoms, offering emotional and spiritual support, and ultimately improving the quality of life for both patients and their loved ones. Engaging in these discussions can create a more compassionate experience during such a challenging time.
Related: Compassionate Care at the End of Life, 2nd Edition
Patient preferences for end-of-life care
As patients approach the end of life, there tends to be a common set of specific priorities that are important to them. These priorities include:
- The need for consistent and trustworthy medical information
- Expert management of pain and other end-of-life symptoms
- The desire to avoid unnecessary prolongation of the dying process
- Alleviating burdens on loved ones
- The opportunity to prepare for death
Despite these clear preferences, a substantial portion of Medicare spending continues to be funneled into hospital care, heavily invested in costly “cure-driven” treatments in those final stages of life.
To better align treatment plans with what patients genuinely value, it’s crucial to integrate their individual goals of care into medical decision-making. The evidence shows a remarkable correlation between addressing these goals and providing higher-quality care.
For instance, a recent study highlighted a troubling trend: the absence of end-of-life discussions in hospitals often led to escalated care during the final weeks of life, detracting from the overall quality of care patients received.
A recent issue of the Journal of General Internal Medicine features important insights from Yuen and colleagues, who shine a light on the barriers that hinder early discussions about cardiopulmonary resuscitation (CPR) preferences. They also propose actionable strategies to promote these critical conversations in inpatient settings.
To ensure that patients receive high-quality care during advanced illness and at the end of life, we need to implement educational initiatives. Physicians must also improve assessment methods that enhance communication skills alongside systemic changes.
Palliative care experts have developed valuable guidelines on how to discuss CPR preferences effectively. These guidelines emphasize clearing up any misconceptions about a patient’s medical condition and prognosis, understanding their goals and values regarding care, and discussing code status in a way that meets informed consent requirements.
Role of physicians in managing hospice patients
Doctors often navigate the complex and emotional terrain of end-of-life issues, tackling sensitive topics like:
- A patient’s diagnosis and prognosis
- Their preferred place of care
- The nuances of withholding or withdrawing treatment while ensuring symptom control
These discussions can be intimidating for patients and doctors. However, doctors must play a pivotal role in initiating and guiding these critical conversations, helping patients and their families prepare for the inevitable.
Inquiries into expected survival time can be particularly challenging for doctors to answer. Uncertainty of the prognosis can lead to fears of either overestimating or underestimating a patient’s remaining time. Such inaccuracies can cause additional distress for both the patient and their loved ones. Moreover, gauging prognosis becomes even trickier when patients or their families find it hard to accept that death is approaching. This denial can amplify the stress for doctors in making crucial decisions about the patient’s palliative care.
While the majority of patients express a preference to die at home, most end up passing away in hospitals or nursing homes. Only about 30% die in their preferred setting. Those who do experience a death in their chosen place report significantly higher satisfaction with the care received from their doctor.
When it comes to managing palliative patients, it is common for physicians to be confronted with the option of withholding or withdrawing treatment and increasing pain relief medication. While this can be difficult, doctors who have undergone training in palliative care are generally more comfortable discussing these topics with their patients. Therefore, appropriate education and training are necessary to improve the end-of-life care for patients.
Treating common end-of-life symptoms
Clinicians should follow guiding principles when prescribing medications to manage symptoms at the end of life. Start medications at low doses and increase them to achieve the desired effect. Initially, give doses as needed, and then switch to a regular dose or long-acting medication for symptom management. When possible, use preventive regimens to avoid symptoms, as it is generally easier to prevent symptoms than to treat them after they occur.
Pain
Pain is common, affecting about 50% of people in the last month of life. It is important to understand a patient’s total pain. This includes physical symptoms as well as psychological, social, and spiritual distress. Despite tougher regulations on opiates for pain, they remain the first choice for managing physical pain in end-of-life patients.
Dyspnea
Dyspnea, or difficulty breathing, occurs often in patients with advanced pulmonary and cardiac diseases. It is also seen in those with cancer, strokes, or dementia. Signs of dyspnea include rapid breathing, increased struggle to breathe, restlessness, and grunting.
Opiates are the primary treatment for breathlessness in end-of-life care. When given at the right doses, they don’t harm respiratory function or hasten death. Opiates can help relieve feelings of breathlessness.
Delirium and agitation
Patients may experience delirium and agitation in their final days or weeks. If these symptoms do not distress the patient, they can often be managed without medication. Always check for treatable causes of delirium, such as side effects from medications, uncontrolled pain or discomfort, constipation, or urinary retention.
Antipsychotic medications like haloperidol and risperidone are effective for treating delirium and agitation in these patients. The doses for delirium are usually much lower than those given for mental health conditions.
Nausea and vomiting
Nausea and vomiting are common challenges in end-of-life care. Various pathways in the brain and stomach contribute to these symptoms. Medications that block certain brain receptors, like haloperidol, risperidone, metoclopramide (Reglan), and prochlorperazine work well for controlling nausea because they affect the brain’s chemoreceptor trigger zone.
Medications that target serotonin, such as ondansetron (Zofran) and palonosetron (Aloxi), are used for nausea caused by chemotherapy and radiation.
Oropharyngeal secretions
As patients approach death, they may lose the ability to manage their saliva and mucus. This can create noisy breathing, often called a death rattle. This sound usually doesn’t bother the patient, but it can upset family and caregivers. It’s important to provide good guidance to help families understand and accept this change.
While anticholinergic medications are sometimes used to manage these secretions, there is limited evidence to support their effectiveness. Common medications used for this issue include hyoscyamine (Levsin), atropine, glycopyrrolate (Robinul), and scopolamine.
Conclusion
End-of-life care is all about honoring individuals in their final days. Physicians should ensure that they find comfort and meaning in every moment. Compassionate care prioritizes a patient’s unique preferences and values. It not only helps mitigate physical discomforts like pain and nausea, but also considers emotional and spiritual well-being. The goal is to empower individuals to engage in activities and relationships that spark joy and fulfillment, allowing them to embrace their final journey with dignity and love.
