The terminal stage of MS and living wills
Why is death and dying such a taboo for MS stakeholders and society in general? Have you completed an advanced directive or living will?
As multiple sclerosis advances people may enter a phase when the complications of MS become life-threatening. I refer to this phase of the disease as the terminal phase of the disease.
The majority of people with MS used to die from MS-related complications in particular aspiration pneumonia, pulmonary emboli, urinary tract infections and septicaemia. In the largest series on the causes of death in pwMS that has been published, three-quarters of deaths were attributable to MS-related complications. These figures were from the pre-DMT and early DMT era and as we have now changed the natural history of MS I suspect that many more pwMS are being spared some of the disability-related complications of MS that cause the pattern of death above. I have noticed in my own patients that the causes of death in pwMS are beginning to more closely mirror those of the general population.
I have frequently been consulted about people with severe end-stage MS who are in intensive care about how to manage them. Frequently these patients have not left instructions on how they want to be looked after, which makes it very difficult for the medical staff and their families. In this situation having an advanced directive or living will is helpful. These provide clear instructions to your family and medical team years before they are needed to guide their treatment decisions about you in the future.
An advanced directive needs to be done at a stage of your life when you are of sufficient mind to instruct your doctors and family how you want to be managed when critically ill. I know from a survey we did several years ago that the majority of pwMS in the late stages of their disease didn’t want intensive end-of-life care. Therefore, if you have not done so already I would urge you to discuss signing an advanced directive with your family and HCPs and then to complete one. There is good evidence that advanced directives are a very cost-effective tool in improving quality of life and saving you and society unnecessary and sometimes futile end-of-life healthcare expenses. In some countries, end-of-life healthcare costs can be catastrophic resulting in families losing all their material wealth. Advanced directives also make things a lot easier for your family; they remove the stress of complex decision-making at the end of your life.
The NHS Choices has very good advice on end-of-life issues and advanced directives. The procedure for completing one is relatively simple and done via your GP.
Other issues that relate to the terminal phase of MS are highlighted on the Holistic Management of MS Tube map. I will over time write separate MS-Selfie Newsletters on each of these subjects as they all have relevance to managing your MS and making informed decisions about how you want to be managed.
Palliative care
Legal aid
Social services
Hospice
Respite care
Dignitas
Assisted suicide
Funeral planning
Dignified dying
Causes of death
Living wills or advanced directive
An MS Society’s once asked me permission to use the holistic management of MS tube map, but wanted to remove the terminal line? They felt it would not be appropriate to inform or remind pwMS that MS has a terminal phase. On principle, I said no. If the MS Society wanted to use the map they needed to take it as is, warts and all. The days of being a patronising HCP and deciding on what information to allow pwMS and their families to see are over.
Life has a terminal phase and the issues being discussed here are not unique to MS and apply to everyone so I am not sure we need to be overly sensitive about these issues. Maybe I am wrong?
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The case study from the 10th of September is about a patient on ocrelizumab who has been recommended to switch to cladribine. In this case study, I discuss the issues around this DMT switch and the issue of COVID-19 vaccine readiness.
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
Well said. Even before I was diagnosed with MS myself, we had a family member with it die from the disease and another have very few issues and live a long life so I always knew of it's potential to go both ways like many diseases and illnesses. After I was diagnosed, anyone in the MS world I spoke to was very insistent MS doesn't kill you. It's not that I was worried what path my own disease would take, I was quite calm in terms of knowing that access to amazing DMTs now (even if we have to fight for that right) made dying from the disease rare, but to me it seemed to deny the reality people with end-stage MS are living and leave them without the help they and their families deserve and should receive, such as preparing for what should happen if they became more ill.
I had many people say to me that my family member didn't die from MS, it was pneumonia but that's like saying another didn't die from cancer, it was the morphine used to manage their pain or the infection they caught. Talking about death and MS needs to become less of a taboo for sure. I don't know if I'm unusual in that I never panicked after my diagnosis, or that experience with family just made me realise it was like any other disease and could go both ways.
This is a brilliant topic. One which is so often avoided. The whole ‘you die with MS, not from it’ statement is more frequently the case than previously, but is not true for us all. People living with Advanced MS, and severely disabled often know they are likely to die of MS or want to ensure they have the means to avoid a horrific death. I am such a person, my reaction to most DMTs was adverse. This meant for the majority of my 25 years with MS I’ve been unprotected from relapses.
Today this means I am a full time wheelchair user. Today I can transfer with some difficulty. Tomorrow that may change. Today I can see, eat and speak, albeit at times with problems, tomorrow I may not. Today I mostly manage to self care, with significant assistance from my spouse. Tomorrow I may need more personal care. I have relatively mild cognitive deficits today, tomorrow these are likely to affect my life more. Today I have enjoyment from life, tomorrow I may not.
Eventually I may want to not live in this body. I have an Advanced Directive, copies of which are lodged with my GP and hospital. I have discussed my wishes with my family and friends. I am a member of Dignity in Dying and dearly wish to see assisted suicide become UK law.
I am so glad you have written this Selfie. It is needful. Many of us are living with early stage MS, and are on the most wonderful DMTs. I am glad that is possible and that death due to MS has become a relatively rare occurrence. For me it is probably a likely future.