Caregivers often shoulder the responsibility of advocating for our loved ones when they are not able to advocate for themselves. This may include treatment and medication choices, when to start or stop treatment, and palliative care.
Making decisions surrounding end-of-life care can be one of the most difficult things a person or a caregiver can do. Here are a few things to consider:
As the Caregiver
- Has your loved one ever spoken about what s/he wants at the end of their life?
- What are your loved one’s beliefs? What do they love more than anything?
- What do they say gives their life meaning? A loved one? Life itself?
- Put yourself in their shoes; what would you want for yourself?
Another good way to make a decision is to ask the doctors questions such as:
- Is there a new treatment that could possibly help my loved one?
- Will this treatment change the way s/he lives his or her life?
- What are the side effects?
- How long before we can expect results?
- If we don’t try this treatment, what can happen?
- If the treatment goes wrong, what could happen?
- Is it possible that s/he is showing signs of improvement?
It is a big help to have someone you can talk to and who can be with you while you talk to the medical staff. It is important to take notes and ask the doctor as many questions as you can. If you need the doctor to slow down or speak up, don’t be afraid to ask.
Also, its important when making these decisions that you have an agreement with other family members or close friends who may want to have a say in the decision-making. Plans can be made more efficiently if the family is involved and everyone is in agreement.
Disagreements with the Doctor
If you find yourself in a disagreement with the medical staff:
- Listen to the doctor’s entire opinion and ask him for a reason behind his suggestion.
- If you still do not agree, ask another doctor.
- Consult the ethics committee or a mediator at your medical facility.
Making these decisions can be very difficult and can wear on a person. When making a final decision involving your loved one’s treatment and care, make sure that you have asked yourself, the medical staff, and your family all of the questions above – as well as any other questions you might have.
As the Patient
Making end-of-life decisions for yourself is something nobody wants to think about; it can be even more difficult to discuss these decisions with someone close to you. When making end of life decisions, make sure you consider the following:
- If you stop breathing, do you want to be resuscitated?
- Do the people close to you know what you want? Do they share the same beliefs as you do regarding religion, medical treatment, and end of life?
- If you are terminally ill, do you want to stay at home, be hospitalized, or go somewhere else?
- Does your insurance or means of payment cover your care? Is there something pending that you need to handle financially that could make providing care harder for your loved ones?
- Will your loved ones be able to carry out your decisions? Will your proxy? (for more information about naming a proxy, see below.)
Have an up-to-date will and keep your insurance information in an accessible place for your family member in case of an emergency. Also keep instructions of what you would prefer in the event that your family is left to make a decision.
Documentation or Advanced Directives
Advanced Directives are written instructions letting your family, proxy, and medical staff know what your decisions are, including your will and healthcare power of attorney. A durable power of attorney for healthcare names a relative or close friend to make decisions for you when you’re not able to. This person is called your proxy. Be sure to sign the durable power of attorney or it will NOT be valid. Also, be sure to select a “back-up” proxy in case the first proxy is not available.
It is important to prepare the Advanced Directives so that your family and the medical staff knows what treatment you’ll accept and what treatment you will refuse. This also makes it clear to your family who you chose to make your healthcare decisions. These forms are available at your local hospital. If you don’t make your decisions clear in this type of documentation, it can make it difficult for a loved one to begin to think about what you would want, and the medical staff will do whatever they can to support you with their medical training.
This is one of the hardest decisions you can make for yourself or a loved one, but planning ahead and speaking to your doctor will help your loved ones, the medical staff and most importantly, you.
Additional Resources and Support
For more information surrounding end-of-life care, the following pages offer resources and support for both patients and caregivers:
