Why is death and dying with MS such a taboo amongst MS stakeholders? #ClinicSpeak
Summary: As multiple sclerosis advances people may enter a phase when the complications of MS become life-threatening. This phase is referred to as the terminal phase of MS. This post discusses a hotline service provided by the German MS Society to help German MSers with advice about palliative care and hospice.
Just over a year ago I bought a pair of rose-tinted glasses to improve my outlook on the world. Several commentators on the blog thought some of our posts were too morbid and not positive enough. I responded that we don't pull our punches and tell things as they are. If people don't want to know the truth they can go somewhere else; there are plenty of sights on the web dedicated to alternative facts.
The following study addresses the underbelly of MS, its terminal phase. It describes the experience of a German MS hotline dedicated to palliative care and hospice care. The hotline received 222 calls over a 27 month period; i.e. ~8.2 calls per month. Germany is a large country with a population of ~83 million, therefore this is probably the tip of the MS iceberg. What this study shows is that there is a need for information and advice about terminal care.
Just yesterday I was asked to comment about a person with MS who was locked-in and was being managed in an intensive care unit as a result of severe brainstem disease. This person was in her late 50's and had MS for ~20 years. The patient was conscious and was actually not quite locked in as she could still twitch one of her fingers. She was using this finger twitch to communicate. I made the point that this is the exact situation when having an advanced directive or living will in place is helpful. It provides clear instructions to your family and medical team years before they need it to guide their treatment decisions in the future. I would recommend you all address this issue in advance. The NHS Choices has very good advice on end-of-life issues and advanced directives.
End-of-life issues that are highlighted on our MS Tube map that possibly need consideration are:
- Palliative care
- Legal aid
- Social services
- Respite care
- Assisted suicide
- Funeral planning
- Dignified dying
- Mortality (cause of death)
- Living will
Did you know that one of the MS Society's asked me permission to use my 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 they wanted to use the map they needed to take it as is, warts and all. Was I wrong? I feel the days of the patronising HCP, deciding what information to give pwMS, are over. To be honest, 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.
Strupp et al. Evaluation of a palliative and hospice care telephone hotline for severely affected Multiple Sclerosis patients and their caregivers. Eur J Neurol. 2017 Sep 19. doi: 10.1111/ene.13462.
The following is an example of an advanced directive to refuse treatment at the end-of-life. This can be adapted for MS.
BACKGROUND: Palliative and hospice care (PHC) still highly focus on cancer patients.
OBJECTIVES: To connect severely affected Multiple Sclerosis (MS) patients and caregivers to PHC, a nationwide hotline was implemented facilitating access to PHC.
METHODS: The hotline was designed in cooperation with the German Multiple Sclerosis Society. Self-disclosed information given by callers was documented using case report forms supplemented by personal notes. Data was analysed descriptively.
RESULTS: 222 calls were documented in 27 months. Patients' (mean age 51.12; range 27-84) mean illness duration was 18 years (range 1 month to 50 years). Inquiries included information on PHC (28.8%), and access to PHC (due to previous refusal of PHC, 5.4%), general care for MS (36.1%), adequate housing (9.0%), emotional support in crisis (4.5%). 31.1% of callers reported "typical" palliative symptoms (e.g., pain 88.4%), 50.5% symptoms evolving from MS, and 35.6% psychosocial problems. For 67 callers (30.2%), PHC services were recommended as indicated.
CONCLUSIONS: The hotline provides insight into needs and problems of patients severely affected by MS and their caregivers, some of which may be met by PHC. Future follow-up calls will demonstrate if the hotline helps improve access to PHC beyond providing information. Overall, our hotline seems to be easily accessible for severely affected MS patients whose mobility is limited.
Addendum: Results of blog surveys done in the past related to this topic.
Labels: #ClinicSpeak, advanced directives, Germany, Hospice, Hotline, Palliative Care, terminal care