Living With Advanced MS: Improving End-of-life Care

Patient Expert

Discussions about end-of-life issues are often taboo in our culture — until we are "suddenly" faced with unpleasant realities and challenging decisions. Although many deaths occur unexpectedly, a large number of deaths follow a prolonged period of decline in health due to a progressive disease. This path of decline has been termed "progressive dwindling."

Four broad trajectories of dying in an aging population were identified in a study of Medicare beneficiaries:

  • Twenty percent of deaths followed illnesses, such as cancer, characterized by a clear clinical transition from treatable to untreatable progression.
  • Twenty percent of deaths were related to progressive long-term conditions, such as COPD, complicated by acute attacks that increase the likelihood of death.
  • Twenty percent of deaths were classified as sudden deaths, such as those following a fatal heart attack or accident.
  • Forty percent of deaths followed a prolonged period of progressive dwindling associated with conditions such as Alzheimer’s disease or other degenerative conditions.

Researchers in England (Martin et al. 2016) examined the deaths of 582 people with MS registered in the UK MS Tissue Bank (UKMSTB) to better understand progressive dwindling in people with MS. They found that 72.5 percent of people with MS died an MS-related death and 73.7 percent progressively dwindled prior to death. Patients included in the analysis were primarily female (70 percent) and had SPMS (68.5 percent) or PPMS (11.4 percent). The average ages of progression, wheelchair use, and death were 45.5, 50.6, and 63.8 years, respectively. Women were typically older when they developed MS or when they died, compared to men.

Causes of death in MS

Researchers were able to examine the clinical records of patients who may not have had MS listed on their death certificate, as was the case for 35.9 percent of the patient records examined. Discussions in the patient community surrounding death and MS often focus on the ideas that MS is not fatal or that complications from the disease may lead to an earlier death. Recent studies indicate that people with MS have a reduced life expectancy of about 6 years compared to the general population, which is improved from older studies — likely due to disease-modifying therapies.

Martin et al. found the most common causes of death were pneumonia (46 percent), MS (14.8 percent), cancer (10.1 percent), aspiration pneumonia (8.6 percent), and urinary tract infection (5.8 percent). Although only 14.8 percent of death certificates directly attributed the underlying cause of death to MS, researchers determined that 72.5 percent of the deaths were MS-related.

Factors associated with MS-related death included younger age at symptom onset, wheelchair use, disease progression, and shorter disease course where patients reached disease milestones more rapidly. Patients who did not experience an aggressive disease course were more likely to die from the same causes as anybody else.

Progressive dwindling in MS

Among the 582 people with MS, 429 (73.7 percent) progressively dwindled, 76 died a sudden death, 59 experienced transition from a treatable to an unrelenting progressive disease (e.g. cancer), and 18 died as a result of an acute exacerbation of a progressive long-term condition. Those who progressively dwindled had an earlier age at symptom onset, more rapid disease progression, and were often wheelchair bound.

Improving quality of life in advanced MS

If doctors, patients, and family members could more easily identify those people more likely to transition into a progressively dwindling stage, measures could be taken to more aggressively focus on improving quality of life and tackle end-of-life care issues. The use of predictors of progressive dwindling and increased access to palliative care in the years prior to death may improve quality of life for patients, and their caregivers, in the progressive stage of disease.

What is palliative care?

Palliative care is not the same as hospice care, which is designed for patients expected to die within a year. But terminology is inconsistent. What is called palliative care in the U.S. may be called formative care in the UK.

Palliative care is designed for anyone with a serious illness, regardless of life expectancy, who needs increased access to strategies to address symptoms, comfort, and quality of life. Patients accessing palliative care may continue to receive active treatment for their disease. Palliative care is often provided by a team of experts who can address specific aspects of patient and family needs. It is often hospital-based, but some communities may offer home-based services.

Additional information regarding palliative care from the National MS Society:

Advance care planning

Regardless of age or disease progression, we all need to engage in advance-care planning, which simply involves making decisions about the health care you would want to receive if you happen to become unable to speak for yourself. The National Hospice and Palliative Care Organization offers helpful information about advance-care planning.

See more helpful articles:

What Is Advanced MS?

Healthy Aging With Multiple Sclerosis

When Should You Consider Nursing Home Care?

Effect of Aging and Multiple Sclerosis