As you work through the complexities of advance care planning and goals of care conversations, you'll encounter specific healthcare jargon that may seem straightforward but hold deep personal implications. The definitions provided here are just a starting point. Ultimately, the meaning of each term will be defined by your unique experiences, beliefs, and desires. It's crucial to grasp what healthcare providers might be seeking when they use these terms, so you can articulate your perspectives and ensure that your care aligns with your personal values.
#1. What does “Quality of Life” really mean to you?
Today, if someone asked you what you think of as a “good quality of life” could you answer? Over time your definition may have changed. Understanding what quality of life means to you is paramount in articulating your goals of care and advance care plans.
To help you reflect on your personal definition, we’ve crafted a series of questions to prompt your discovery. They aim to spark a deeper consideration of what is truly important for your well-being, especially in situations where you may not be able to communicate your preferences directly.
Each topic area and question is derived from a synthesis research studies focused on older adults' perspectives on quality of life, as reported in the What does quality of life mean to older adults? A thematic synthesis article. Although numerous definitions and theories exist, there remains a lack of consolidation of older adults' own views on the subject.
As you scan the nine topic areas, consider which aspects resonate most with you. What would be valuable for your loved ones and medical team to know when treating you, especially when you cannot speak for yourself? You don’t have to have answers for all nine. It’s a lot to contemplate. Instead focus primarily on those areas that are most important to you and your situation. This approach helps you express what’s important to you in conversations with loved ones and your medical team.
1. How does my health and wellness affect quality of life?
When talking about your health and wellness we’re referring to your overall physical, mental, and emotional state. A possible scenario might be deciding between undergoing a rigorous chemotherapy regimen that could potentially extend your life, knowing it may significantly diminish your daily quality of life due to severe side effects, versus opting for palliative care that prioritizes your comfort, potentially allowing you to engage more fully with family and enjoy daily activities but without seeking to cure the illness. General health and wellness questions and considerations include:
Given your circumstances, would you prefer a treatment that potentially extends life by a range of six months to two years but may involve significant side effects such as chronic fatigue, nausea, and a decrease in cognitive functions, or would you opt for comfort care that focuses on quality of life, maintaining your current state of wellness even if it might not extend your life?
In light of your condition, should your care prioritize aggressive treatment that offers a chance of recovery or possible cure, but might result in permanent disabilities such as loss of mobility or the need for ongoing nursing care, or should it emphasize a natural progression with minimal medical intervention, allowing the disease to advance at its natural pace while focusing on symptom relief and maintaining daily functioning?
2. What role does my independence play in healthcare decisions?
The ability to manage your activities of daily living and make personal decisions about your care signal your level of independence and autonomy. For example, you may be faced with choosing between installing extensive home modifications and hiring part-time help to maintain autonomy in your familiar environment, versus moving to a residential care facility where your basic needs are met but your personal space and daily routine are more controlled. Some general independence and autonomy questions and considerations include:
Taking into account various medical procedures, would you prefer to undergo rigorous treatments that could potentially restore some level of independence, knowing these may come with demanding rehabilitation schedules and uncertain outcomes, or would you opt for less invasive care that preserves your current state but might limit your total independence and require more assistance?
Could you accept a higher level of care, such as hiring a live-in nurse or moving to an assisted living facility, which could reduce your day-to-day independence but provide safety and medical oversight, or do you prioritize staying in your own home, accepting the risks involved, such as falls or medical emergencies occurring without immediate help?
3. How important is my social connection to happiness?
Your social connection involves interactions and relationships with family, friends, and the community that support your emotional health and a sense of belonging. For example, common tradeoffs include deciding to move into a senior living community that offers regular social activities, group meals, and communal spaces to ensure you remain socially active, compared to remaining in your family home where interactions might be limited but personal space is abundant. Possible social connection questions and considerations cover:
Whether you will prefer undergoing treatments in a hospital setting if it offers a higher chance of recovery, knowing it might limit your daily social interactions, or would you choose outpatient treatments that are potentially less aggressive but allow you to maintain regular contact with family and friends?
Given your current environment, would you prefer living in a community setting where social activities and interactions are readily available, enhancing your sense of belonging and emotional well-being, or do you value the privacy and familiarity of your own home, even if it means fewer opportunities for socialization?
4. How is engaging in meaningful activities crucial for my quality of life?
A discussion of meaningful activities includes engagements and hobbies that provide joy, a sense of accomplishment, and enrich your daily life. So, you’ll want to explore things like opting to manage your condition with medication that allows you to continue community volunteer work, rather than undergoing surgery that could lead to a lengthy recovery period, possibly keeping you from these activities. Here are some meaningful activities questions and considerations:
Given your options, would you choose medical treatments that might restrict your work or participation in hobbies you enjoy, requiring you to perhaps find new ways to engage in these activities that accommodate your health situation to potentially extend your life, or would you opt for alternatives that might not extend life as far but maintain your ability to engage in those activities?
When considering your daily activities, would you be willing to accept some limitations in physical abilities if it means less intensive medical interventions, allowing you more time to enjoy activities that you love?
5. What impact does my living environment have on my comfort and safety?
The comfort and safety of your personal environment refers to the physical surroundings where you live and receive care, which greatly influence your well-being, safety, and overall comfort. For example, you may decide to adapt your home for safety and comfort, such as installing grab bars and emergency alert systems, to continue living independently rather than moving to a skilled nursing facility. Questions and considerations surrounding the comfort and safety or your living environment include:
Where would you opt for receiving care in a specialized, clinical setting that might offer cutting-edge treatment but less personal freedom, or the familiarity and comfort of your home, knowing treatments might affect your ability to engage socially, whether by limiting your energy levels during recovery periods or necessitating periods of isolation to prevent infections?
When considering changes in your living arrangements due to health needs, would you prefer transitioning to an assisted living or nursing facility that provides around-the-clock care, or do you prioritize maintaining independence in your own home, even with some increased safety risks?
6. How could financial security influence my healthcare choices?
Financial security refers to the assurance that you have sufficient financial resources to manage healthcare costs and other living expenses, minimizing financial strain. For example, you may decide to forego an expensive surgery with a low chance of success in favor of using resources for supportive home care and other comforts to enhance daily living. Just a few financial security questions and considerations to get your started:
Would you opt to invest in expensive, potentially life-extending treatments that may deplete your financial resources, or would you prefer more affordable care options that allow financial stability for other life aspects?
When evaluating treatments, how do you balance the cost with expected outcomes? Are you inclined to pursue high-cost treatments with uncertain outcomes, or prioritize more certain, cost-effective care?
7. How do spiritual and emotional priorities shape my healthcare preferences?
Addressing spiritual and emotional well-being encompasses your feelings of inner peace, fulfillment, and emotional stability, often in alignment with personal or spiritual beliefs. For example, you may ask for palliative care that includes spiritual counseling and support groups, ensuring your emotional and spiritual needs are met alongside physical health care. Spiritual and emotional well-being questions and considerations may include:
Would you prefer treatments that are consistent with your spiritual values, even if they might be less aggressive medically, or do you prioritize the most medically effective treatments, setting aside spiritual considerations?
When considering your care options, would you want services that support your emotional health, such as mental health counseling or spiritual care, or is just receiving purely physical treatments sufficient?
8. Why is adaptability important in managing my health as I age?
Your willingness and ability to adapt and cope with changing conditions reflects how well you manage the physical and psychological impacts associated with aging and illness. This may include things like deciding to undertake physical therapy sessions several times a week and renovating your home to enhance mobility, rather than opting for a high-risk surgery that could offer faster but less certain improvements. Questions and considerations regarding your adaptability and coping capabilities may encompass:
Are you willing to adapt to a new daily routine, which could disrupt your usual activities, that incorporates regular medical treatments, such as dialysis or physical therapy several times a week, if it potentially extends your abilities or improves your condition, or would you prefer to avoid disruption and maintain your current way of living, even if it involves some physical limitations?
Do you value treatments that may improve your condition but require significant lifestyle changes, such as frequent hospital visits or adjusting your living environment to accommodate your health needs, such as wider doorways for wheelchair access or special equipment to assist with daily tasks, or do you prioritize stability in your daily life, even if it means living with certain limitations?
9. What does dignity and respect mean in the context of medical treatment?
Dignity and respect encompass the assurance that healthcare interventions uphold your personal dignity, treating you with respect and consideration for your self-esteem throughout the healthcare process. For example, respecting religious or cultural dress codes during medical examinations, ensuring privacy during treatments, or adhering to gender preferences in caregiving personnel can be crucial for maintaining respect and dignity. Questions and considerations to evaluate the importance of dignity and respect in your care could include:
Would you choose life-extending treatments like colostomy or tracheostomy, which might save your life but could cause discomfort and potential embarrassment due to their invasive nature and effect on daily activities or decline because you feel the equipment would negatively impact your dignity?
Do you prefer receiving care at home where you can receive more personalized attention and respect for your wishes or in a clinical setting where the staff may not have the time to fully engage with you and your family, potentially making you feel overlooked and disrespected?
#2. How do your “values” influence your healthcare decisions?
In the context of advance care planning, "values" encompass the deep-seated beliefs and principles that guide your decisions throughout life, including your healthcare choices. These are influenced by a variety of factors, including your cultural background, religious beliefs, and personal spirituality, which play a crucial role in shaping how you view medical interventions, the priorities you set for treatment, and your preferences for care.
For example, you may decide not to pursue aggressive cancer treatments in favor of quality of life because it aligns with a belief system that prioritizes natural end-of-life processes, as seen in some Eastern philosophies that emphasize acceptance and minimal medical intervention at life’s end. Further examples of values and beliefs influencing medical decisions include:
Cultural Considerations. In some cultures, there is a strong preference for receiving care at home or from family members rather than in institutional settings, which might influence decisions about long-term care or end-of-life settings.
Religious Practices. Some religions have specific rites and practices for end-of-life care, such as the use of sacraments or rituals that need to be performed, which could impact decisions on where or how care is received.
Ethical Stances. Ethical beliefs about the sanctity of life can affect decisions regarding the initiation or withdrawal of life-supporting treatments, such as mechanical ventilation or artificial nutrition and hydration.
Questions and considerations that help evaluate how your personal values and beliefs influence your healthcare decisions may include:
Do you generally follow medical advice even if it conflicts with your personal beliefs or are your medical decisions primarily guided by personal values, such as religious beliefs—for example, refusing treatments like blood transfusions or certain medications due to Jehovah’s Witness or other religious doctrines?
Does your autonomy in making healthcare decisions aligned with your cultural values, such as using traditional remedies or holistic approaches favored in your community, even if they diverge from conventional medical advice, or do you prefer deferring to medical expertise for the potential health benefits it may offer?
#3. What happens when you are “incapacitated”?
Incapacity refers to the inability to make decisions about your own care, stemming from a lack of cognitive or physical capability to express your quality-of-life desires and personal values. This can occur due to conditions like dementia, severe injuries, or even during treatments that impair your cognition, such as being under heavy sedation or on a ventilator. In the medical context, there are two related but distinct concepts to determine if you may be incapacitated.
Competence. A legal status determined by a judge, focusing on whether you can make decisions about personal or financial matters. This status is rarely revoked unless there is clear evidence of dangerously impaired judgment.
Capacity. A clinical assessment that is situation-specific and can be determined by any clinician. It revolves around whether you can understand the implications of each possible course of action regarding your healthcare. You are considered to have capacity if you can appreciate the consequences of your decisions, even if those decisions go against medical advice or seem contrary to your own well-being.
#4. What are “medical goals” and how do they affect you?
Medical goals form a crucial part of your healthcare discussions, focusing on the overarching objectives of your treatment, such as prolonging life or emphasizing comfort. These goals often shift based on your current health status, medical prognosis, and personal preferences.
In practice, setting medical goals involves detailed discussions between you and your healthcare provider about what outcomes you value most. This could include goals like maintaining independence, managing pain effectively, being able to attend family events, or reaching a significant life event. It might also mean deciding against certain treatments that could extend life at the cost of undue suffering or loss of dignity.
For example, if you're facing a chronic illness, you might prioritize treatments that maximize your day-to-day function over those that could extend your lifespan but diminish your quality of life. Or, if you're recovering from a major surgery, your immediate goal might be to regain enough mobility to return home and resume activities you love, like gardening or walking your dog.
#5. How do “treatment priorities” shape your care?
Treatment priorities are crucial, especially as you age or manage multiple chronic conditions. For older adults with multimorbidity, healthcare can become a delicate balancing act, where the benefits of certain treatments might be uncertain and the burdens significant. You might find yourself spending an average of two hours a day on healthcare-related activities, which highlights the need for treatments that genuinely benefit your quality of life.
The reality is that treatments often focus on managing individual conditions without considering how they might interact with others, potentially leading to more harm than good. As you navigate these complexities, it becomes essential to define what truly matters to you—whether it’s prolonging life, maintaining independence, or reducing the physical and emotional burden of disease management.
Setting your treatment priorities means making choices that align with your quality-of-life goals and personal value to determine the type of care you are willing and able to undertake. This might involve opting out of certain aggressive treatments in favor of those that maintain your quality of life or choosing interventions that specifically address the most significant symptoms affecting your daily activities.
#6. What are your “care preferences”?
Care preferences encompass not just the types of medical treatments you want, but also where and how you wish to receive care. These preferences are deeply personal and can significantly influence your experience and satisfaction with the healthcare process, especially as you manage chronic conditions or face end-of-life decisions.
At the heart of defining your care preferences is the choice about where you want to receive care. Many people prefer to receive care at home, in a familiar and comfortable setting, rather than in a hospital or nursing facility. This preference can greatly affect your quality of life, making it crucial to communicate it clearly in your goals of care and advance care plans. Home care might involve home health services, hospice care at home, or regular visits from healthcare professionals to manage your conditions effectively while allowing you to stay in the comfort of your own surroundings.
How you receive care is equally important. You might prefer a holistic approach that considers not just the physical symptoms but also the emotional and psychological aspects of treatment. This could mean having access to a team that includes not only doctors and nurses but also social workers, counselors, and spiritual care providers. Alternatively, you might prioritize minimizing hospital visits and interventions, focusing instead on treatments that can be managed at home to limit the disruption to your life.
Care preferences also extend to the finer details of healthcare, such as the degree of autonomy you wish to maintain in making medical decisions, the intensity of medical interventions you are willing to undergo, and how much you want your family involved in your care process. For instance, you might choose to have a do-not-resuscitate (DNR) order in place or specify your preferences for pain management and other supportive therapies.
How to distinguish between your medical goals, treatment priorities, and care preferences?
Medical goals, treatment priorities, and care preferences are interconnected aspects of healthcare planning that together shape your journey, yet they each serve distinct purposes.
Medical Goals are fundamentally about what you aim to achieve through medical treatment. These goals can range from recovery and the return to a normal lifestyle, to managing symptoms effectively, or even extending life. For instance, your medical goal might be to recover enough to engage in meaningful activities or to manage pain effectively enough to enjoy time with family. These goals are often set based on your overall health outlook and the nature of any illnesses you may be battling, taking into consideration what is realistically achievable.
Treatment Priorities relate to the specific interventions or medical actions you prioritize to achieve your medical goals. These priorities often involve making decisions about which treatments to pursue based on their potential benefits and drawbacks, especially in the context of chronic or multiple conditions where treatments might conflict or cause cumulative burdens. For example, you might prioritize treatments that offer the greatest improvement in quality of life with the least disruption, or you may choose to forego certain aggressive treatments in favor of palliative care that focuses more on comfort.
Care Preferences detail your choices regarding the setting of your care and the way it is delivered. This includes preferences about being treated at home versus in a medical facility, the level of family involvement in your care, and specific directives about end-of-life care, such as hospice arrangements or DNR orders. These preferences are about ensuring that the way you receive care aligns with your personal values and desired quality of life, making sure your healthcare experience is as aligned with your personal wishes as possible.
Together, understanding the distinctions and interactions between your medical goals, treatment priorities, and care preferences helps ensure that your healthcare pathway is not only medically sound but also personally meaningful.
#7. What are your “wishes” regarding healthcare?
In the context of advance care planning, the term "wishes" encapsulates all the crucial elements of your healthcare and personal preferences. This term brings together various aspects such as your quality-of-life considerations, values, medical goals, treatment priorities, and care preferences, framing a holistic view of what you desire in your healthcare journey, especially under specific circumstances.
Wishes would reflect your overarching expectations and stipulations for how you want to be treated in various medical and personal scenarios. They could range from preferring to stay at home rather than in a hospital as you manage a chronic illness, to choosing comfort care over aggressive treatments in terminal stages. For instance, if you have a chronic condition like heart failure, your wishes might include being able to attend family events without severe discomfort or ensuring that your treatment does not impede your ability to engage in cherished daily activities like walking your dog or enjoying meals with family.
#8. What constitutes a “good end” for you?
A "good end," often referred to as a "good death," focuses on providing you with the highest possible quality of life and comfort towards the end of your journey, rather than attempting to cure an incurable illness. This approach emphasizes the importance of emotional and physical comfort, which can involve a range of palliative and hospice care services designed to meet your specific needs without the harsh interventions of life-sustaining machines or invasive procedures that might extend life at the cost of suffering.
Choosing a good end often means opting for comfort care over curative treatments, allowing for a more peaceful and dignified conclusion to life. This can include managing pain and other distressing symptoms, offering emotional and spiritual support, and ensuring that your environment is as comfortable as possible. For many, this means being at home surrounded by loved ones rather than in the clinical setting of a hospital. Discussions about these preferences should be held early and revisited often with both your healthcare providers and family members to align their understanding and preparations with your wishes.
Achieving a good end involves navigating numerous difficult discussions about the realities of your condition and the limits of medicine. It requires candid conversations where you, your medical team, and your family come to terms with what can realistically be done to enhance your comfort and dignity. These discussions also help clarify how you wish to spend your final days, including decisions about forgoing specific treatments in favor of maintaining a better quality of life. For more detailed information on palliative and hospice care options that support these decisions, you can refer to the How and When Do You Choose Between Hospice or Palliative Care post.
#9. What should you understand about “end of life care”?
"End of life" is a term that encompasses the care provided in the final hours, days, weeks, or even months of life, reflecting the highly individual nature of dying. The process and timeline can vary greatly, influenced by a combination of chronic conditions, terminal illnesses, and personal circumstances. This stage of life supports the perspective of death as a natural part of life, where medical intervention shifts focus from cure to comfort.
The end-of-life period—when body systems begin to shut down and death becomes imminent—generally lasts from a few days to a couple of weeks. The specific progression depends on the underlying illness and the individual's unique health status. It's a time when the goals of care may pivot towards ensuring comfort and dignity rather than extending life. For a more detailed exploration of how one dies and the various scenarios that might unfold, you can refer to our previous post Understanding Death: How We Die by Dr. Nuland dedicated to this topic.
Generally, if you or a loved one are experiencing signs that the illness is progressing despite frequent hospital visits, or if repeated treatments no longer improve the condition, it may be time to consider hospice and palliative care. These signs might include multiple emergency room visits with only temporary stabilization, repeated hospital admissions with the same or worsening symptoms, a desire to remain at home instead of in a hospital setting, or a decision to cease active treatment for a disease. All of these occur as end-of-life approaches.
#10. What are the “goals of care”?
When planning your healthcare, particularly under the shadow of serious illness or aging, it’s crucial to distinguish between "quality of life" considerations and "goals of care." Quality of life is deeply personal, focusing on what makes life worth living for you—be it spending time with family, enjoying hobbies, or maintaining independence. In contrast, goals of care are medical discussions that align these personal desires with the realities of medical treatments, detailing the interventions that are best suited to support your lifestyle preferences and health conditions.
For instance, if your quality of life is defined by the ability to be at home, actively participating in family gatherings, and enjoying your garden, then your goals of care might focus on treatments that manage symptoms without frequent hospital visits. This could mean choosing less invasive treatments that can be administered at home to avoid hospital stays that could take you away from these valued activities. Conversely, if remaining mentally sharp and engaged in intellectual pursuits is critical for you, you and your healthcare provider might prioritize treatments that minimize cognitive side effects, even if they require more intensive care.
Goals of care discussions translate your personal quality of life priorities into a medical plan, documented by your healthcare provider to guide the treatment you receive. These conversations ensure that medical decisions—like whether to undergo a certain surgery or accept a particular therapy—are made in the context of how they will impact your daily life and long-term well-being. They help bridge the gap between your healthcare preferences and clinical practice, making sure that your care plan genuinely reflects what's most important to you.
By understanding these 10 terms and considering what they mean to you, you can make informed decisions that reflect your values and desires, ensuring your healthcare journey is as personalized and respectful as possible.