People with disabilities have always had a voice. We’re just teaching the world different ways to listen.
A disability victim services agency

Deaf woman with short hair signing

The Significance and Meaning of National Healthcare Decisions Day

April 16, 2021 / Healthcare Decisions

An older white woman sits with the back of her head to the camera as she talks to a younger white man. She sits at a desk with a laptop open and he stands. They seem to be talking about something important.

by Diana Spore, PhD, MGS

National Healthcare Decisions Day (NHDD), founded by Attorney Nathan Kottkamp, falls each year on April 16. The Conversation Project, created in 2010, is the foundation for NHDD. On this day, the objectives are to make efforts nationwide to educate citizens and healthcare providers, and to promote engagement in critical conversations about advance healthcare planning. The groundwork must be laid so that our choices about physical and mental healthcare will be honored when we are unable to speak for ourselves. We can be empowered about our healthcare decisions in three important ways:    

  • By thinking about and sharing what we want done in the event that we become very ill, incapacitated or are dying; 
  • By selecting someone who will speak on our behalf if we are unable to speak for ourselves; and 
  • By creating advance directives and related legal documents (i.e., durable power of attorney, mental health power of attorney, living will).    

Taking these actions can make it more likely that any decisions our family members or designated proxies make for us will be based on awareness and knowledge of what our wishes were when there were no potential questions about our competence.     

A useful acronym for remembering the key factors associated with what NHDD “means” is A-B-C-D-E: Awareness, Beliefs, Choices/Conversations, Decisions, Empowerment. Your wishes matter and should be followed to the extent that they are legal and practicable. Your values and beliefs should be factored into your advanced healthcare planning decisions. In this blog, we will focus on the following: (1) advance planning in terms of physical healthcare, and (2) psychiatric advance directives. 

On National Healthcare Decisions Day 2020, immediate concerns related to becoming ill and dying from COVID-19 could not be ignored. Issues related to advance care planning took on a sense of urgency for those who were older and most vulnerable to contracting the coronavirus. For example, decisions had to be made about the timing for hospice care rather than palliative care, when invasive and aggressive interventions should cease, when a ventilator should be pulled, and when it was time to let someone go.    

Selecting Someone to Serve as Your “Voice”

One of the most important decisions you will make in this process is selecting the person who will speak on your behalf about healthcare decisions when you cannot. Who can you trust to stand up for you and honor your choices even if others disagree, to the extent that is legal and practicable? The individual must know you and your decisions well and truly care about what happens to you  

With regard to the one being considered as your proxy in psychiatric advance directives, consider how they talk about individuals with mental illnesses and about you when you were “ill” in the past. How would the person deal with issues that arise when outpatient therapy or other interventions might be helpful for you but hospitalization is not warranted?  Do you feel comfortable speaking with them about mental health issues that you are struggling with?  Do you feel that you are safe to discuss your status openly? If you are having suicidal ideation, would you have any second thoughts about sharing that information with this person, knowing that he/she  would have power over your psychiatric healthcare and where you would receive it?   

Five Wishes

A unique easy-to-use advance directive – Five Wishes -- was created by a non-profit organization, Aging with Dignity. In 1996, it was introduced in Florida. Then in 1998, it was introduced nationwide, in partnership with the American Bar Association’s Commission on Aging and medical experts. It is a combination of a living will and a healthcare power of attorney document in Wishes 1 and 2, but what makes it truly unique is what is addressed in Wishes 3, 4 and 5:

WISH 1: “The Person I Want to Make Care Decisions for Me When I Can’t”

Certain key characteristics you might want to prioritize when selecting your proxy or agent have been addressed above. In the Five Wishes document, it is noted that you should not select someone who is a proxy for 10 or more people unless it a family member. You cannot select your healthcare provider, including an owner or operator of a residential or health facility that is caring for you. You also cannot select a healthcare provider’s employee or the spouse of an employee.

  • So, what kinds of decisions can your proxy be empowered to make on your behalf? They can:
    • Make choices about medical care that will be provided, including tests, surgery and medications.   
    • Request and stop medical care, including interventions that will keep you alive.
    • Decide where you will live – moving you to an assisted living facility, a nursing home or hospice.
    • Choose to have medications or treatments given to you to alleviate pain. 

WISH 2: “The Kind of Medical Treatment I Want or Don’t Want”

Here are some questions to ask yourself as you consider this wish:

  • What life-support measures do you want to have implemented, and under what circumstances? 
  • With regard to circumstances, what do you want to have happen when you are close to death, in a coma and not expected to recover, or when you have sustained permanent brain damage and will not get better or recover?
  • Also, what are your views about hospice and/or palliative care? (This is typically addressed in a traditional living will.)

WISH 3: “How Comfortable I Want to Be”

Here are some questions to ask yourself as you consider this wish:

  • What are your views about pain management or receiving help for symptoms like depression or hallucination?    
  • What would you like to have done for your comfort? Frequent warm baths? Cool cloths placed on your forehead? Lips and mouth kept moist?   Music played? What types of personal care do you want to have done routinely?

WISH 4: “How I Want People to Treat Me”

Keep in mind that some of what could have been wished for in the past would not have been possible in hospitals during COVID-related visitation restrictions. Here are some questions to ask yourself as you consider this wish:  

  • What would you like to have done for you? Do you want to have people with you, including when it is close to the time of your death? Do you want to have people praying by your side? Do you want someone to hold your hand? Would you prefer the people with you treat you with kindness and optimism rather than sadness or despair?   
  • Where would you like to die? Are you okay in the hospital? Would you prefer to be in a hospice center? Perhaps you’d like die at home, if at all possible?

WISH 5: “What I Want My Loved Ones to Know”

Here are some questions to ask yourself as you consider this wish:  

  • Do you feel that you have important things you want to address before the end of your life? Do you want your family members to know that they are loved? Is there something you want to be forgiven for or someone you want to forgive? Would you like your family members to come together and make peace before you pass away?
  • What would you like to have done with your body after you die? Do you want to be buried, cremated or to have your body donated? Where do you want your body or remains to be placed? 
  • What do you want your obituary to say? Do you want a memorial service? Who would you like to speak or perform? What music or songs would you like?

While not addressed in Five Wishes, a very personal way to express what you want your loved ones to know is to write legacy letters. They can give you an opportunity to elaborate on certain topics (e.g., forgiveness, message you want to send to your healthcare proxy). For examples of legacy letters, please see Section 5 of Leaving a Legacy: Exercises to Guide You Through the Creative Writing Process (Mental Health and Recovery Board of Ashland County, 2020). You may also want to look at A Guide to Leaving Your Mark through Legacy Writing and Projects, which I wrote in collaboration with the Adult Advocacy Centers and the Mental Health and Recovery Board of Ashland County.

Five Wishes meets legal requirements for an advance directive in 44 states and the District of Columbia. In Ohio, Five Wishes cannot stand alone because it does not meet legal requirements. It would need to be attached to the state-required form. However, it can serve – at a minimum – as a tool for guiding conversations about advance care planning, outlining details about your wishes and giving you the opportunity to explain and clarify your choices.

Psychiatric Advance Directives

The creation of psychiatric advance directives (PADs) is particularly relevant for those with serious mental illnesses, who are more at risk of undergoing a psychiatric crisis. PADs should also be considered by those who are older and are beginning to display periodic confusion or other dementia-like symptoms, or those who have been diagnosed with an early stage of dementia. They must be created and signed when you are not declared to be incompetent and are able to communicate well. 

PADs provide you with the opportunity to think about and share what you want to have done, and what matters most to you in terms of mental healthcare and crisis interventions, whether you are receiving care in psychiatric hospitals voluntarily or by force.  

Here are some questions you may want to consider as you’re writing your PAD:

  • If inpatient psychiatric care is needed, what hospital do you prefer? Is there any hospital that you do NOT want to be transported to for any reason (e.g., prior experience at this hospital that was traumatizing)?
  • Do you have any preferred therapists or psychiatrists? How about any who you would NOT want to see`?
  • Are there any types of treatment that you would not want to have or to have only as a last resort?   
  • What medications would you prefer to not receive? What medications are you UNABLE to tolerate due to serious side effects? Who should be involved in making the decisions about which drugs (psychotropic and/or non-psychotropic medications) should be administered? For example, would you want your primary care physician (your current prescriber) to be involved in making decisions about the use of non-psychotropic drugs, such as antihypertensive medications?  
  • Who do you want to be involved in making decisions about your overall mental health treatment? Who do you want to serve as your “voice” if you cannot speak on your own behalf (your designated mental health power of attorney or your “proxy”)?   
  • Who do you want to attend to your “responsibilities” (paying bills, caregiving, pet care) while you are hospitalized, if such treatment is deemed to be warranted?   

PADs are tools for self-empowerment, for demonstrating insight over what is needed for you to recover and remain well, and for having strong relationships with healthcare providers. You are the expert on yourself, and your voice must be heard while you are able to express yourself well. Along the way, you will reveal thoughtfulness, knowledge about self-care, and an awareness of the things that may work against you becoming well or improving markedly.    

Much like with Five Wishes or a living will, discussing your PADs may strengthen family bonds and reduce family burdens in the event of an emergency that requires immediate decisions. However, it must be noted that with PADs, in particular, it is more than okay if you set boundaries about whether or not you will have a family member serve as your proxy or if you will block some or most of your biological family members from being involved at all. For some people, they may not want family members to have any decision-making power because of past trauma or abusive experiences. 

Concluding Points

National Healthcare Decisions Day takes place on April 16 each year as a day dedicated to talking about advanced healthcare planning, increasing awareness of options, making choices and decisions, and pressing forward with completing legal documents. However, these issues can be thought about and discussed at any time; notably, we make decisions about our health almost on a daily basis.    

Consider who you want to speak on your behalf if you cannot speak for yourself -- this is a critical decision. Decide what you want to have done if you become very ill, are incapacitated, or are dying. Be empowered by making your wishes known, sharing them, and putting them into legal documents. It’s one of the best gifts you can give your future self.

Diana Spore is an advocate for individuals facing mental health challenges and those who are living with dementia, a writer/editor, and a mental health consumer in recovery. Spore received her Master’s degree in Gerontological Studies from Miami University (Ohio), and earned a PhD in Human Development and Family Studies, with a concentration in aging, from Penn State. She completed postdoctoral training at Brown University. Spore’s areas of expertise include mental health and aging, mental health recovery and trauma-informed care, medication optimization, long-term care, caregiving, and psychotropic drug use and inappropriate drug use among older adults. She is a former Board member of the Mental Health and Recovery Board of Ashland County (Ohio; MHRB). She was Editor-of-Chief of TAPESTRY OF OUR LIVES, an anthology of works created by individuals in recovery, a project that was done under the auspices of the MHRB. Spore served as Project Lead for a “Writing for Recovery” initiative, MHRB, and engaged in all aspects of the project, which has resulted in sustained spin-off efforts. Diana Spore has expertise in creative writing, writing for recovery, journaling for caregivers, legacy writing, and advocacy writing.