It is natural for a PALS to have thoughts about control over when they die. Living with ALS can create fear about what may happen as it gets worse. However, many PALS find an unexpected ability to adapt to the challenges ahead, and their views can change over time. (On this forum one can find instances of PALS reporting they have made a “final” decision to refuse a PEG or ventilator, only to continue writing posts after receiving those treatments.) This has been compared to being in a “revolving door” of end of life decisions. Consequently, it can be very difficult for a CALS to know when a decision is truly final.
It is generally recommended that every PALS should be reassured that, with the right care, dying can be managed to ensure a dignified and peaceful death. Most people have a more gentle death than they may imagine, but the progression of the disease can feel overwhelming.
Often extreme feelings are due to the wider pressures the disease can create and through fear of becoming a burden to others. With the right support, many problems can be solved or reduced to help the PALS and those close to them to achieve a better quality of life. This may help the PALS to feel calmer and consider a range of ways to manage the demands of the disease. If suggestions or solutions to these concerns can be provided, thoughts of suicide may subside. Discussion is therefore crucial in order to explore and understand these issues and concerns.
Unless people are going “public” with their end of life decisions, there is little reason to worry about things like legal authorities interfering with those decisions. But if legality is a concern, it is best to consult a local lawyer with health care expertise. IN GENERAL (although laws may vary from place to place), in most places it is legal for someone to:
- take their own life
- refuse life-sustaining treatments. This is not assisted dying.
But in it is not legal for someone else to:
- encourage another person towards suicide (including advising them how to do this)
- assist them with their suicide.
Medication cannot be used with the aim of hastening death, but it may be provided as part of a package of palliative care to reduce pain and other symptoms at end of life. There have been cases where such medication was administered “preemptively” before invasive ventilation was withdrawn at the patient’s request.
In some places, a physician may prescribe drugs that a terminally ill patient may self-administer with the specific purpose of hastening death, and in these jurisdictions this is not considered “suicide” when certain conditions are met. One of those conditions is that the patient must be fully informed about their prognosis and palliative and hospice care options. If the patient is fully informed about these things, the prescription is not assisting suicide and is therefore lawful. If the patient is not fully informed, then it is assisting suicide and is unlawful. Consequently, if legality is a concern, it is extremely important for the patient to be fully informed about their palliative care alternatives to a life-ending prescription. Therefore, when PALS and CALS have these discussions, it is important to explore alternative ways to solve the issues, so that the PALS can make an informed choice about any next steps.
A PALS can influence how their care will be managed in the later stages by using advance care planning. They can (and should) record advance decisions to refuse or withdraw treatment, in the event they become unable to make or communicate these decisions for themselves.