Nearly 1 million adults in the U.S. are living with Multiple sclerosis (MS), an autoimmune disease that causes the  immune system to mistakenly attack healthy cells. In people with MS, the immune system attacks cells in the myelin, the protective sheath that surrounds nerves in the brain and spinal cord. Damage to the myelin sheath interrupts nerve signals from the brain to other parts of the body, which can lead to symptoms affecting the brain, spinal cord and eyes.  There is currently no cure for MS, however treatments on managing symptoms, reducing relapses and slowing the disease’s progression. 

There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases such as MS. Advance care planning (ACP) is an integral part of this approach that involves ongoing communication about an individual's values, goals and preferences regarding medical care during serious and chronic illness. ACP differs from general medical decision-making in that it is based on an anticipated deterioration in the health of an individual. It includes a focus on the person’s wishes and preferences for the time when they lose decisional capacity. 

It is important to begin ACP discussions early on in an individual's MS care journey. While some individuals have little disability, others can have life-altering physical and psychological limitations. What makes ACP so important for these individuals is that 40 – 70 percent develop cognitive impairment throughout their disease with some severe. Therefore, people with MS may have reduced decision-making ability, impairing their everyday functioning that may limit their ability to plan for their future care. full conversation

There has been a resurgence of interest among those with MS who want to talk about their future medical plans with health care professionals. Unfortunately, despite a desire to have these important discussions, few of these individuals actually engage in them with their medical providers. A recent study found that among neurology individuals, those with MS are the least likely to be referred to palliative care services and the most likely to die in a hospital. Reasons for this can be complex and the study cites the nature of the relationship between those with MS and their neurologist may be important as well as the association between palliative care and end of life which seems to speak to the uncertainty of the trajectory of MS. This uncertainty, along with the difficulty of having these conversations, can make putting them off seem easier than making end-of-life plans. 

When ACP discussions are appropriate

While individuals and their caregivers can initiate ACP conversations at any time, healthcare providers also are able to do so, and the initiation of these conversations may be welcomed by those involved in making these types of decisions.  There are a number of occasions in an individual's MS care journey where beginning ACP discussions might be appropriate.

  1. When life-prolonging or life-sustaining treatment begins. In MS this might feel too soon – but it could be an opportunity to highlight that these discussions will need to be had, to open the door to those discussions later on, and to start the individual perhaps mulling their preferences over.
  2. When a decision is made to stop disease-modifying therapy. This is a key change in a person's journey with MS and provides a good opportunity to pause and reflect, and to plan for the future.
  3. Self-recognition of deterioration in their condition, or perhaps a continued deterioration, perhaps a series of events, or the change of circumstances like moving into sheltered accommodation or requiring at-home care.
  4. After a life-changing event can be a trigger for a conversation, such as an emergency hospital admission or a significant change in personal circumstances. However, timing is essential, and whilst the event is going on it can be too traumatic for the individual to have a 

Benefits of ACP Conversations 

As discussed, the uncertainty of an individual's disease trajectory can lead to a delay in ACP discussions for those diagnosed with MS. However, when the disease does progress leading to significant losses such as physical functions impacting daily relationships and life, individuals with MS begin to understand the severity of the illness. Thus, they become more willing to discuss the future. This acceptance is vital to the progression of planning for the future, and this is an opportune time to approach these difficult conversations.

ACP can be seen as a tool for enabling control and autonomy in decision making for seriously ill individuals. Framing the conversation surrounding ACP as putting all decisions and control in the individual’s hands rather than leaving important decisions to family and caregivers may be comforting and empowering to the individual. Clear, concise, and empathetic conversation between individuals and their medical teams can break down barriers and contribute to trust and open dialogue.  

Advance Directives (AD) can help family members, friends, or caregivers avoid conflict among each other, or with healthcare providers, when care decisions need to be made under difficult circumstances. ACP can provide specific instructions as to what individuals want or need to happen when a worsening condition, health care crisis, or life-threatening event limits their decision-making capability. Advance directives can be changed at any time, and it is important to review documents periodically to be sure it still reflects an  individual's wishes for future care. 

Partnering with Iris

At Iris, our specialized ACP services are designed to support both caregivers and individuals with serious illnesses. We start the planning process early, allowing everyone involved to feel confident about their care choices. Our proprietary, disease-specific AD documentation captures member care goals in straightforward terms, removing complexity for family members during the event of a medical emergency. 

To learn more about how Iris can provide your ACP services for your seriously ill patients, get in touch with our team today.