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  • Writer's pictureCindy Davis

Essential Elements of Advance Care Planning: What Do You Need to Know?


Elderly couple discussing their advance care planning documents

What is advance care planning (ACP)?

Comprehensive Advance Care Planning (ACP) goes beyond mere healthcare directives; it embodies a holistic approach to ensuring that your healthcare journey aligns with your values, wishes, and quality of life objectives. At its core, ACP is an ongoing dialogue—not just a one-time conversation—about how you want to live your life at every stage, especially towards the end. It's a process that involves not only the individual but also family, friends, and healthcare providers, fostering a collaborative environment for shared decision-making.

 

ACP begins with understanding the distinction between competence and capacity. Competence, a legal determination made by a court, is rarely changed without evidence of significantly impaired judgment. Capacity, however, is more fluid and can be evaluated by any clinician. It's about the individual's ability to understand the consequences of healthcare decisions and make choices that reflect their personal values and wishes, even if these choices differ from medical recommendations or seem counterintuitive to well-being.

 

The ACP process allows you to express preferences across a spectrum of scenarios, from desiring all possible medical interventions to preferring care that focuses solely on your comfort and quality of life. It recognizes that everyone’s values and preferences for end-of-life care vary greatly. Some may prioritize being alive under any circumstances, while others may prefer avoiding intensive care or receiving treatment at home.

 

Unfortunately, a significant barrier to achieving desired healthcare outcomes is the reluctance to appoint a healthcare proxy—a trusted individual empowered to speak on one's behalf when you're unable to communicate. This hesitation, often rooted in fear of confronting mortality, incapacity, and the unknown, can lead to a default healthcare system approach of pursuing all possible treatments, regardless of your personal desires or the likelihood of adding meaningful life quality. This "default" can overshadow essential discussions about future care, comfort measures, expected life span, and the feasibility of receiving care in familiar surroundings.

 

The advance care planning process advocates for your autonomy in healthcare decisions. By actively engaging in ACP, you help to insure your last chapters of life journey most closely reflects how you want to live, promoting peace of mind for you and your loved ones. Through ACP, your medical team moves beyond the impersonal "do everything" approach to a more compassionate, person-centered focused on your unique life story and healthcare preferences.

What Medical Interventions Should You Consider?

To make decisions you’ll have to be knowledgeable of your options. These interventions, ranging from life-sustaining treatments to palliative measures, carry their own set of implications for quality of life and care outcomes. Here are some high-level details for several common interventions to enhance your understanding. These are not a substitute for more meaningful conversations with your medical team about the specifics regarding your situation.


Three images for artificial nutrition and hydration, me3chanical ventilation and cardiopulmonary rescucitation


Artificial Nutrition and Hydration

What is it for?

Artificial nutrition and hydration are used when a person cannot eat or drink enough to sustain life and health. This might be due to an illness, a condition affecting swallowing, or decreased consciousness.

How is it done?

Nutrition can be provided through a tube directly to the stomach (gastrostomy) or the small intestine (jejunostomy), while hydration is usually administered intravenously.

When can it be helpful?

In cases of temporary inability to eat or drink, such as recovery from surgery, it can support healing.

What are the risks?

Long-term use can lead to infections, complications at the insertion site, and can impact the quality of life, particularly in end-of-life care settings where natural processes of dying are prolonged.

Mechanical Ventilation

What is it for?

Ventilators support or replace the breathing function when individuals cannot breathe adequately on their own, due to illness, injury, or surgery.

How is it done?

A machine delivers air to the lungs through a tube inserted into the windpipe (trachea).

When can it be helpful?

It's crucial for life support during critical illnesses or surgeries and for certain chronic conditions that impair breathing.

What are the risks?

Risks include pneumonia, damage to the lung tissue, and dependence on the machine, which can affect decisions about prolonging life in terminal conditions.

Cardiopulmonary Resuscitation

What is it for?

Cardiopulmonary resuscitation (CPR) is an emergency procedure to restore heart and lung function in cases of cardiac arrest.

How is it done?

It involves chest compressions often combined with artificial ventilation to manually preserve brain function until further measures restore spontaneous blood circulation and breathing.

When can it be helpful?

CPR can save lives in sudden, unexpected cardiac arrest, particularly in otherwise healthy individuals.

What are the risks?

In frail or seriously ill patients, the likelihood of a successful outcome diminishes. Risks include broken ribs, brain damage due to lack of oxygen, and the possibility of survival with significantly reduced quality of life.

Understanding these interventions is just the beginning. It's equally important to consider how each aligns with your values, quality of life goals, and overall care preferences. Discussions with healthcare providers can clarify the role of each intervention in your care plan, helping you make choices that reflect your wishes. This careful consideration ensures that, whether in emergency or planned care scenarios, your healthcare team is equipped to honor your preferences, offering care that aligns with your values and goals.

Which treatments might be discontinued for hospice care?

Hospice care represents a paradigm shift in the approach to treatment, focusing on comfort and quality of life rather than curative measures. As patients transition to hospice, the emphasis is on alleviating symptoms and supporting emotional and spiritual well-being. This often means discontinuing treatments that no longer align with the goal of comfort care.


Images for four treatments that may be discontinued in hospice care

Below are key interventions typically reconsidered or halted upon entering hospice.

Chemotherapy and Radiation Therapy

What changes? Curative-intent chemotherapy or radiation therapy is generally discontinued in hospice care.

 

Why are they stopped? The side effects of these treatments can significantly diminish your quality of life without contributing to the primary goal of comfort. In the context of terminal illness, the burden of these treatments often outweighs any potential benefit.

Dialysis

What changes? Patients with end-stage renal disease may choose to stop dialysis when transitioning to hospice care.

 

Why is it stopped? Dialysis is a life-sustaining treatment that can be physically taxing. When the focus shifts to maximizing comfort, the stress of ongoing dialysis sessions may no longer be considered beneficial or in line with your wishes.

Certain Medications

What changes? Medications that are not contributing to symptom management or comfort may be discontinued. This includes treatments for chronic conditions such as statins, antihypertensives, or oral hypoglycemics.

 

Why are they stopped? The goal in hospice is to reduce pill burden and focus on medications that provide symptomatic relief or improve quality of life. Continuing medications for chronic disease management may no longer be appropriate when your life expectancy is limited.

Clinical Trials

What changes? Participation in clinical trials aimed at disease cure or modification is usually ceased.

 

Why is it stopped? Clinical trials often require intensive monitoring, follow-up, and sometimes burdensome interventions that are not aligned with the hospice philosophy of care focused on comfort and quality of life.

The decision to discontinue one or more of these treatments is deeply personal and made in the context of each your values, goals, and condition. It involves thoughtful discussions with your healthcare providers and loved ones about what matters most in the time remaining. Hospice care supports a dignified end-of-life experience, prioritizing comfort, peace, and family togetherness over the rigors of curative treatments.

What non-medical matters should you discuss?

Since advance care planning involves far more than just medical treatment preferences a consideration of non-medical matters may also be equally important to you. Addressing these aspects can provide comprehensive guidance to your family and caregivers, ensuring a seamless transition that honors your legacy and alleviates conflicts and stress.


7 images for non-medical considerations to be covered in advace care planning

Questions to cover include:

Who will handle your affairs?

Designating a trusted individual to manage your financial and legal matters is essential. This person, often named as an executor in your will, will be responsible for settling debts, distributing assets, and ensuring your estate is managed according to your wishes. You may also want to use an online tool to document who will manage these activities for a less complex situations.

What to be done with your body?

Decisions about burial, cremation, body donation for medical research, or other alternatives should be communicated clearly. This could include specific instructions about the funeral service, the type of urn or casket preferred, and the final resting place.

What to do with your possessions?

Beyond the distribution of financial assets, it's crucial to consider sentimental items that may not hold significant monetary value but are rich in personal and emotional significance. Whether it’s family heirlooms, photos, letters, or mementos, explicitly stating who should inherit these items can prevent disputes and ensure they are treasured by those who appreciate their sentimental value.

Who will care for pets?

Pets are often considered part of the family, and their care after your passing is a concern. Identifying a caretaker who agrees to assume this responsibility ensures your pets continue to receive love and care.

Who will care for disabled children and adults?

If you're responsible for a dependent with special needs, establishing a care plan, possibly including a special needs trust, is critical to ensure their well-being and financial security without jeopardizing any government assistance they receive.

What is the location of key documents?

You’ll want to make sure all vital documents, such as birth certificates, marriage licenses, divorce decrees, social security cards, and your will, are organized and accessible. Inform your executor or a trusted family member of their location.

Where are key accounts and login details?

Today, digital assets and online accounts are an often-overlooked aspect of end-of-life planning. Providing a secure method to access your digital footprint, including social media, banking, and email accounts, is essential for managing your digital legacy.


Discussing these non-medical matters and documenting your preferences relieves your loved ones of the burden of making these decisions during a time of grief. It ensures that your wishes are respected and that your affairs are in order, contributing to a legacy that reflects your values and desires. Engaging in these discussions as part of the ACP process provides clarity, reduces stress for your family, and ensures a sense of peace for both you and those you leave behind.

What's the difference between the most common ACP documents?

Each ACP document serves a distinct purpose and offers different levels of detail about your healthcare preferences. Understanding the nuances of these documents is crucial for making sure your healthcare wishes are accurately documented and respected.

What is an Advance Directive?

Image of living will and power of attorney documents

Advance Directives primarily serve as a legal framework to communicate your wishes during a health crisis. They are structured documents, often specific to state or jurisdictional guidelines, and typically include two main components:

 

  1. Healthcare Proxy, Durable Medical Power of Attorney, or Healthcare Agent. This designates an individual to make healthcare decisions on your behalf when you're unable to communicate.

  2. Living Will. Specifies your preferences for CPR, life-sustaining treatments, artificial nutrition, and hydration.

 

Advance directives are designed to be concise, capturing only critical information for emergency situations. Depending on your state, they may also require formal witnessing or notarization.

What is a Personal Advance Care Plan document?

Image of elderly couple signing personal advance care documents

For a more comprehensive and personalized approach, consider using a personal care plan document format. Unlike the relatively rigid advance directives that are characterized by legalese, personal care plans allow you to provide greater detail about the “what” and “why” of your healthcare preferences, quality of life goals, and even after-death instructions like cremation or burial preferences. These seek to paint a fuller picture of you so your loved ones and medical team understand what matters most to you.

 

Getting these documents witnessed or notarized is generally optional. Regardless, keep in mind that most healthcare providers prioritize aligning care with your stated objectives and wishes rather than whether the documents comply with this type of legal formality.

What are Mental Health Directives?

Elderly woman with dementia signing documents

Mental Health Directives are specialized legal documents that allow you to outline your preferences for healthcare and treatment in anticipation of a time when you might not be able to make these decisions yourself due to a neurodegenerative condition. These directives are particularly vital if you have been diagnosed with an illness such as Alzheimer's disease, Parkinson's disease, or another condition that progressively impairs your cognitive abilities.

 

In a Mental Health Directive, you can specify what types of treatments you would want—or not want—especially in scenarios where your mental health condition could lead to situations requiring psychiatric intervention or other medical decisions. This could include preferences about medications, hospitalization, the use of restraint, or choices regarding emergency care.

 

By setting up a Mental Health Directive while you are still fully capable, you ensure that your healthcare aligns with your values and wishes, even when you're no longer able to communicate them. This proactive step not only guides your caregivers and healthcare providers but also helps alleviate the burden on your family by reducing uncertainties about your care preferences during critical moments.

What are Portable Medical Order forms?

Image of portable medical order form

Known by many names, portable medical orders—POLST or POST (physician/provider orders for life-sustaining treatment), MOLST (medical orders for life-sustaining treatment), COLST (clinician orders for life-sustaining treatment) or MOST (medical order for scope of treatment)—are medical forms written by a licensed physician that specify the types of life-sustaining treatment you wish to receive as you near the end of life. Think of them like a written prescription. These documents are actionable across various healthcare settings, including in emergencies, guaranteeing that your medical care decisions are followed by all healthcare personnel involved in your care. Portable medical order forms traditionally do not include things like goals of care, quality of life priorities, and care setting preferences. Instead, they detail your choices regarding interventions like CPR and other life-sustaining measures, clearly stating whether you prefer:

 

1.   Full treatment,

2.   Selected non-burdensome treatments, or

3.   Comfort-focused care.

 

Understanding the differences between these types of ACP documents is key to effectively planning for how you want to be treated if incapacitated. As described above, each document serves a unique role in capturing and communicating your medical goals, treatment priorities, care preferences, place of death desires, as well as organ donation and post-death events choices. By familiarizing yourself with these options, you can use the best document, or combination of documents, to achieve your desired end-of-life experience most closely.

Why is naming your Healthcare Advocate important?

Selecting a healthcare advocate or surrogate is a fundamental aspect of ACP, yet it is a step often overlooked until a crisis makes the absence of such a designation glaringly evident. Designating your surrogate isn’t merely about appointing someone to make decisions; it's about entrusting someone with the authority to voice your healthcare preferences when you cannot. Acting with "substituted judgment," they make choices as you would, based on previous conversations and documented preferences. This requires selecting someone who not only knows you well but also respects your views enough to advocate for them under pressure. Ultimately, this significant role gives you peace of mind someone that you trust and understands you and will speak up if you can’t.

 

Unfortunately, the pandemic starkly highlighted the chaos and uncertainty that can ensue without a designated healthcare proxy. Many faced serious illness without having engaged in meaningful conversations about their care preferences or potential recovery trajectories. In the absence of clear direction, the American healthcare system defaults to an often aggressive, "do everything" approach. However, this default fails to encompass crucial aspects of your care such as personalized communication, comfort-focused interventions, and consideration of how your life expectancy may influence preferences.


Image of daughter with mom getting loaded into ambulance

Selecting a surrogate involves more than just naming someone; it requires your thoughtful consideration, discussions, and agreement on being the voice of your healthcare preferences. Dr. James Tulsky emphasizes that trust is paramount in this choice, suggesting that the designated surrogate might not always be a family member or friend but must be someone capable of adhering to your wishes in difficult situations.

 

The paradox in choosing a healthcare agent lies in the instinct to protect loved ones from tough decisions. However, without clear guidance from you and/or access to your ACP documents and portable medical order forms, your family and healthcare agent is left to navigate complex choices under stress, often leading to decisions that may not align with your preferences. Regular, open dialogues about what matters most, and updating your surrogate as situations or preferences change, are critical to ensuring your wishes are honored.

 

Over the years, advancement of ACP has moved beyond just a check-box, decision-making exercise to fostering deep, meaningful conversations about preferences, values, and care goals. This evolution in approach acknowledges the importance of preparing everyone involved for future healthcare decisions, thereby reducing anxiety, depression, and emotional distress during life’s last chapters.

 

Bottom line, it’s incredibly important you formally name a healthcare advocate. It's about ensuring a trusted individual is prepared to express your healthcare wishes, enabling a transition of care decisions that truly reflect your values and preferences. This aspect of ACP not only empowers you and your surrogate, but also provides comfort and clarity, reinforcing the importance of mutual understanding and respect in shared decision-making about healthcare options.




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