Multiple Sclerosis Minute: Palliative Care for Multiple Sclerosis

Palliative Care

Palliative care focuses on individuals facing serious illness. It aims to reduce patient suffering in physical, psychologic, social, and spiritual domains. Initially, used mostly in oncology, palliative care more recently has been adapted for several neurologic disorders, including multiple sclerosis (MS). Palliative care provides many tools, including guidelines for clear communication, incorporation of patient values into medical decisions, and a focus on symptom treatment, anticipatory guidance, and supporting care partner well-being. Any phase of a disorder is appropriate for a palliative care approach, including at diagnosis; palliative care is not reserved for the end of life. Specialist palliative care is provided by trained palliative specialists. This article focuses on primary palliative care, when people who are not palliative care specialists (eg, neurologists), incorporate palliative care approaches into clinical care.^1,2 The majority of this article focuses on practical ways of incorporating primary palliative care into MS care.

MS and Palliative Care

A small but growing literature on palliative care interventions for people with MS primarily focuses on individuals who are severely affected.³ With a palliative care intervention in participants severely affected by MS, there was statistically significant benefit on caregiver burden scales and some MS-specific symptoms, but not overall MS or palliative care scales.⁴ Another trial of palliative care vs placebo for individuals severely affected by MS showed statistically significant improvement on a symptom burden scale with palliative care.⁵ Further palliative care clinical trials, particularly in people with MS who are less severely affected, are needed.

A palliative care approach is ideal for use in MS care because of the many symptoms and needs that people with MS can experience. MS can cause many physical symptoms, as well as psychologic, emotional, and spiritual distress; all are domains that palliative care addresses. A palliative care approach dovetails well with existing care patterns in MS. Because of the long duration of MS, people with MS and their care partners often develop trusting relationships with their MS clinicians. This overlaps with the palliative care emphasis on clinician-patient relationships. Another overlap with palliative care is the existing focus of MS clinical care on symptom treatment.

Incorporating Palliative Care Into MS Care

Delivering the Diagnosis

Effective communication is important at all stages of the MS disease course, including diagnosis. When preparing to deliver a diagnosis of MS, using SPIKES (Table), steps for discussing bad news developed in oncology, can be helpful.⁶ Select a quiet, private location for the discussion. Try avoiding medical jargon. Ask the patient for permission to discuss the diagnosis, then give a “warning shot” that you are going to share difficult news. Next, make a brief statement indicating the diagnosis. Pause to let the patient process. Allow the patient to guide the next part of the discussion with their questions. You can acknowledge and respond empathetically to the patient if they express emotions.⁷ When discussing prognosis, use a “best case/worst case/most likely outcome” approach (Figure). If possible, schedule a close follow-up visit to discuss treatments.

Offering Treatments

Effective communication is important when discussing medication decisions, such as starting or changing an MS disease-modifying therapy. Before launching into discussion of the pros and cons of specific MS therapies, first check your patient’s understanding of their disorder.⁸ It is also important to assess their values and preferences, when establishing goals of care.¹ To understand a person’s values and preferences it is helpful to ask them about their hopes and fears for the future.⁸ Then use their goals of care to help guide decisions among medically reasonable options.

Supporting Caregivers

Approximately 30% of people with MS require assistive care for activities of daily living.⁹ Many care partners are family members or friends,¹⁰ who are at risk for their own physical and psychologic health issues that affect their quality of life and, sometimes, their ability to provide care.¹¹ Palliative care emphasizes supporting care partners.^12,13 Neurologists can ask about care partners’ wellbeing and guide them towards helpful resources. If needed, MS clinicians can encourage care partners to work with their own clinicians to address their medical or emotional needs. Care partners can also be referred to social work for services such as medical transportation, aide service, and respite care. MS clinicians can also support care partners by providing them with needed medical information to help the person with MS navigate MS care.

Providing Anticipatory Guidance

Another focus of palliative care is providing anticipatory guidance, rather than reacting only to current symptoms or issues. This allows individuals with chronic illnesses to better understand their future prognosis. Anticipatory guidance is particularly important for people more severely affected by MS. A person with MS experiencing multiple hospitalizations for infections, especially aspiration pneumonia, may experience future life-threatening infections. Discussing advanced care planning, including establishing a health care proxy and creation of a living will, would be appropriate. For individuals with MS experiencing progressive gait decline, counseling about making their homes more accessible for the future may be helpful. Guidance about future neurologic prognosis and potential effects on work and activities of daily living are often best addressed using an approach of “hoping for the best but planning for the worst.” During these difficult discussions, the clinician can use “I wish” statements to show empathy.¹⁴

Referring When Necessary

Some individuals will still need the expertise of palliative care specialists. Some triggers for considering referral to a specialty palliative care service include the clinician’s lack of surprise if a person in their care were to die in the next 12 months. A patient experiencing multiple recent hospitalizations for infections is another potential trigger. Other triggers can include a functional decline, the need to escalate disease-modifying therapy, difficult to manage symptoms (eg, pain), or a patient experiencing spiritual or existential distress. Many palliative care teams include a wide variety of expertise that includes clinicians, social workers, and chaplains who can address different domains of distress.

Conclusion

Palliative care provides a tool kit for MS clinical care, including clear communication techniques for difficult conversations, incorporating patient values into selection of disease-modifying and symptomatic treatment, providing support to care partners, and offering anticipatory guidance and referral to palliative care specialists as needed. Although further research is needed, incorporating palliative care techniques into MS clinical care may increase quality of life for people with MS and their care partners. Clinicians should consider using palliative care techniques in any phase of MS clinical care, beginning at the time of diagnosis.