When facing a health challenge or terminal diagnosis that may involve life decisions, how to proceed is a choice as unique as each patient and family. In circumstances where a person can’t make these decisions, loved ones can feel overwhelmed with more questions than answers.
Just as if the patient could act independently, there is no “one-size-fits-all” approach when it comes to care. That being said, there are personal, emotional, and legal factors that are important to consider if you or a family member are included and/or chosen to carry out medical decisions on behalf of someone else. Here are some questions and answers to help guide you to an informed decision.
Does my loved one have decisional capacity?
Having decisional capacity means a person is capable of making decisions regarding their own health, medical care,
treatment plan, and overall lifestyle and well-being. Decisional capacity is
typically evaluated by the following criteria:
- Can a person thoroughly understand the decision they are making and the potential outcomes? Can they evaluate the decision and outcome(s) logically based on their wants and needs?
- Do they truly comprehend the risks and benefits associated with their options and ultimate choice?
- Can they clearly communicate their thoughts and feelings in relation to these questions?
A healthcare professional can help you and your family evaluate your loved one’s decisional capacity and what steps make sense depending on the level of capacity he or she displays. It is important not to allow personal choices or beliefs to sway the evaluation of their decisional capacity. Decisional capacity often changes over time and should be monitored carefully.
What are my loved one’s wishes?
People typically express their wishes for medical care in two ways: communication with family and loved ones and/or through an advance directive.
Communication from your loved one: If your loved one has previously expressed his or her wishes to you directly, consider it an honor. This means that person trusts you to see those wishes carried out to the best of your ability and without judgment if you are part of their caregiving ecosystem. If a decision must be made and the patient no longer has decisional capacity, you may have to rely on interpretation of their wishes – so be sure to ask as many questions as possible if/when you are having this conversation, while your loved one can communicate logically and clearly on their own behalf.
Advance directive: In some cases, a person may create a written document called an advance directive to legally arrange their wishes ahead of time, should they become incapacitated or unable to communicate them in the future. Many documents can act as an advance directive:
- Living Will: A living will allows someone to document their wishes for medical care in the event he or she is unable to express them. Living wills can include instructions for organ donation, pain management, end-of-life care, and preferences for medical intervention, including life-sustaining treatments or cardiac resuscitation (also known as a DNR).
- Healthcare Power of Attorney: A healthcare power of attorney (HCPA) allows a person to legally appoint someone else to make medical decisions on their behalf, known as an agent. This healthcare agent may make any decisions regarding that person’s medical care, as long as the agent and any healthcare provider follows instructions in the HCPA or any other legal document. While the agent has legal authority granted by the HCPA, he or she should still act accordingly to honor any known wishes of the patient that aren’t expressly included.
- Durable Power of Attorney for Healthcare/Healthcare Proxy: These are additional terms that may be used for a healthcare power of attorney.
Advance directives are legally-binding documents, and should be prepared with the guidance of a professional to ensure they are done correctly and align with the requirements of the applicable country and state. They can be beneficial for patients, family members, and caregivers by reducing ambiguity and hopefully preventing any disagreements over the patient’s wishes or differing opinions.
What if there is no advance directive?
In the absence of an advance directive, family members can often make medical decisions on behalf of their loved one. Decision makers are usually prioritized based on relatedness to the patient, ranging from spouses and domestic partners to adult children and parents, then to adult siblings or other close family or friends.
It’s important to be aware of the regulations in your specific area, as well as the potential for court involvement if a decision can’t be reached within the family and no advance directive is available.
'Do Not Resuscitate’ Orders
An order that prevents healthcare providers from resuscitating a patient using CPR is called a ‘Do Not Resuscitate’, or DNR, and communicates to medical care teams that a person does not wish to receive intervention if their heart or breathing stops. A DNR can also include instructions beyond CPR, such as whether the patient consents to life-sustaining measures including the use of a ventilator or certain aggressive medications. Do Not Resuscitate orders allow an individual, or their appointed decision maker, to clearly express limitations on life-saving interventions when it is likely to cause more harm than benefit to the patient, or they wish to cease all treatments until their time has ended.
A DNR can be included in a will or other advance directive, or through several other channels, including:
- Written or verbal instructions
- A medical alert worn on their person (ie. bracelet, necklace, tag)
- Medical records
As with advance directives, it’s important to make sure your DNR is legally binding based on the laws of each jurisdiction, and that it is shared with the patient’s healthcare providers.
With or without a legal directive in place, your Remarkable Hospice team will do their best to involve a patient’s family and their loved ones in care planning. It is our goal to individualize every patient’s plan of care to meet the patient and family where they need us. We are here to bring peace and comfort to our patient and their families, walking beside them during and after hospice care, and we understand that the choices made during a terminal illness are a unique and deeply personal experiences that make lasting impacts.
We are here to provide guidance and support. If you have any questions about how we work with families to honor end-of-life wishes, or how our Remarkable Team can provide Remarkable Care for someone you know, please don’t hesitate to contact us.