There are many challenges for caregivers, but one of the most difficult is what to do when life and death decisions present themselves. In the best scenario, your senior loved one had already filled out advanced directives for you and they are written down and you can easily know what your loved one would want you to do. You also would have had long conversations with your loved one outlining how they would want to be medically treated in different types of situations. But, that is the ideal. What happens if those conversations did not occur and/or the situation is different from anything previously imagined? There are limits to planning ahead for such things and many people do not plan ahead.
Planning for End of Life
So, if you are reading this and you are in a situation where you can let others know what you would want and you can talk to your loved ones about what they would want – do so before the fact. It really does save a lot of grief and hardship for those around you if you plan ahead. You can find excellent resources online for writing down your wishes ahead of time based on which state you live in. As in most things in life, pre-planning and open communication is typically helpful!
If there is an advanced directive, it is important to make copies of it for the doctors, nurses, and other family members so that everyone knows what the person wanted. If there are conflicts, hospitals may have mediation or ethic review committees to assist families with difficult situations.
But what if you are faced with it and do not have any written or spoken knowledge of your loved one’s wishes?
End of Life Decisions Without an Advanced Directive
- Get the facts: Talk to the doctor and ask a lot of questions regarding the medical situation your loved one is in. Tell the doctor you want the frank truth as some doctors do not know if you want to be comforted or want the realistic version of the prognosis. Ask what will the likely outcome be even if the person gets through the medical crisis – will they ever breath on their own? Has there been brain damage? What quality of life can the person expect if things turn around? What is the expected outcome? What would the doctor do if in your shoes and why? If you don’t feel certain about the answers you are getting, ask for another doctor’s opinion.
- Check your own values and the values of your loved one: Some religions are very clear about what should be done in end-of-life situations. Do you and your loved one have religious guidelines that you may want to follow?
- Include the family: Each family situation will be different, but what do others think? Ideally, this type of decision is made consensually with the family and not put on one person alone. Conversely, you may be in a situation where everyone disagrees with an action and that can mean stalling and delays. Some families even end up in court over such decisions. So, what would be the best decision taking into account your family make up? Ideally, a family meeting or conversation would occur rather than having one person make the decision without talking it over. Remember that some people will be very uncomfortable with this conversation if it is perceived to be a “plan” to end someone’s life. Dying is not something that is easy for most people to consider. Family members may have various emotional reactions and it is important to not proceed to react to those reactions – it will just balloon into a family crisis that is unnecessary. Listen and respect everyone’s view point – allow some time for the information and options to sink in.
- Pros and Cons: After getting some information about treatment options, you have to consider the pros and cons of the action under consideration. Will the action you take reduce pain and suffering or increase it? Will the action create more hardship on the patient? How long will the action be in effect and/or how will it prolong life? Again, the answers from the doctor are needed here to determine these pros and cons.
- What about Hospice care? If your loved one is in the hospital and you are considering to not take aggressive treatments, is hospice available to allow the person palliative care at home?
If you are experiencing this type of situation, get support from others – family members, medical staff, clergy, etc. You will want to have as much help and information as possible.
Other end-of-life decisions include things like hospice care, funeral planning, and estate planning. The more pre-planning that is done, the easier it will be for all involved.
Treatment Decisions - Things to Ask Your Doctor
- What is the treatment going to do for the person?
- Is the treatment going to cause more pain or ease pain?
- How will the treatment add to the person’s comfort?
- What could we do medically to help this person have the most comfort?
- If there were a turn-around in this critical stage, what kind of life can we expect for the person in terms of quality and time?
- Is Hospice an option?
- What happens if we remove the device (feeding tube, respirator, etc.) – what will occur next?
- What would you do – and why?