According to The Conversation Project, 92% of Americans think it’s important to discuss their wishes for end-of-life care, but only 32% have done it. As you consider the unknowns about your future health and decisions that might need to be made on your behalf, it’s essential that you reflect on your values and how they relate to your preferences for treatment. This reflection prepares you to talk about your priorities with those on your healthcare team and to write them down in an advance healthcare directive.
Ideally, you will also choose a healthcare decision maker (also called your “healthcare agent”) and talk about your thoughts with this person. Don’t force yourself to complete this conversation in one sitting. That could be overwhelming. And keep in mind that over the years, as your health and life circumstances change, you will want to update your advance directive and your healthcare decision maker through new discussions. Talking about your values may even draw you closer to the person you have chosen to make decisions on your behalf.
The end goal of these conversations is to provide guidance to anyone who needs to make decisions when you are unable to do so. But the conversations are also much bigger than that.
It’s about living While life support issues are a part of the discussion, it’s not just about death and dying. In some ways, this is a great time to think about what is important to you about living and how you might make adjustments so your life is more in alignment with your priorities.
These conversations are not just for people with a serious illness. Every adult needs to make their wishes known—before it’s too late. You never know. Realistically, something could happen even today that might render you unable to speak for yourself in a health crisis.
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What makes life worth living?
Before engaging in conversation about your healthcare wishes, do some personal reflection about what matters most to you. What brings joy to your days? Meaning to your life? For instance, you might wish to consider the following:
Your “bucket list.” With whatever time you have left, be it weeks, months, or years, is there anything you really hope to do, see, or say before your time is done?
What makes a good day good? Your answers will provide clues for yourself and others concerning what to prioritize in your daily life. That is, if others had to be in charge of your life, what should they focus on providing for you?
What makes a bad day bad? Are there things that are important to you to avoid or control? For instance, nausea from chemotherapy. Or certain characteristics in care providers (perfume, loud voice, etc.). Share this information with your loved ones and your healthcare team. Ask for their help.
Is there anything that might be “worse than death”? For some, it might be a life of unrelenting pain. For others, it would be immobility or dementia so advanced they can’t recognize their family or friends. Each of us has our own unique threshold of acceptable quality of life.
You may have a general sense of where you are on this continuum of priorities. There is no right or wrong. And there is plenty of middle ground in between. Which of these statements is closest to how you would feel if you were seriously ill?
“As long as there is hope, do everything you can to keep me alive.”
“If my day-to-day quality of life gets too low, I would prefer to be kept comfortable and peacefully let nature take its course.”
How might you change these statements to more closely reflect your feelings? Follow your gut with what feels true for you. Let your doctor, your family, and your healthcare decision maker know where you land on this continuum.
More and more, medicine is adopting the principles of “patient-centered care” and “shared decision making.” Rarely does the doctor tell the patient what to do. Instead, in the ideal relationship, patient and doctor work together to decide on a care plan that helps the patient live according to their own values and priorities.
Consider for yourself: Do you prefer to be involved in all care decisions? To know all the details? Or would you prefer that a doctor choose, or that those close to you work with a doctor to decide on your course of treatment? Again, there is no right or wrong. It’s simply a matter of your own personal preference. Where do you fall on this continuum:
“Please include me in all decisions. Tell me about lab tests and let me know the diagnosis. Explain all my options in detail, including the pros and the cons. Be honest with me about my chances of living or dying. Also my likely quality of life with each type of treatment.”
“I prefer that others take the lead. Make the decisions you think are best based on what you know of my values and priorities. I don’t need details. What I need most is your help staying upbeat and positive.”
How might you modify these statements? Share your thoughts with your healthcare decision maker, your doctor, and your family.
The topics of these conversations are often the groundwork for a time when your healthcare decision maker may need to answer questions about life support measures. Understanding your priorities about quality and quantity of life will be important. It will also be important to weigh the likely outcomes of the different treatments; for instance, cardiopulmonary resuscitation (CPR), ventilators (mechanical breathing machines), and artificial nutrition (tube feeding). It will help your healthcare decision maker to talk with you now about each of these life support measures. Once you know the survival rates, the likelihood of brain damage, whether you are likely to be able to live independently afterward, you can give your healthcare decision maker a better sense of which treatments you are likely to want or not want.
If you are a family caregiver hoping to bring up the subject with a loved one These are big topics and not always easy to bring up with a parent or other relative—especially if you live out of the area and don’t see them regularly. Plus, there may be different generational norms about conversations concerning death or dying. Unless there is a serious illness, they may not want to talk about such issues.
Going slowly—talking about different topics over time—is often the wisest approach (versus one mega conversation). You might use a “soft start,” commenting on a health issue in the news or a friend’s illness and treatment. Ask your family member about their thoughts. Bit by bit, start building greater comfort with the topics.
A bucket list conversation is often a light-hearted way to start. Consider watching “The Bucket List” movie with Jack Nicholson and Morgan Freeman. This comedy allows for some silliness and laughter as a segue to a more serious discussion. Besides, why not share your bucket list? Who knows! This might spark a fun adventure and create an enduring memory.
Even a conversation about what matters most in life can often be introduced fairly lightly, enabling you to introduce larger issues gradually.
A direct talk about death or end-of-life care. This topic is usually the hardest. Once everyone gets past the initial discomfort, though, most families are relieved to have the issues out in the open. Here are some prompts that might help:
A friend’s experience. “My friend’s father just died. It sounds like it was really hard on the family, mostly because they didn’t know what he wanted in terms of treatment at the end. Everyone had a different idea of what should be done. And where he should be. They couldn’t agree. It made a tough situation worse. It occurs to me, I don’t really know what your thoughts are. Should we do everything to keep you alive, or would you rather not be at the hospital? What are your preferences?”
Creating your own advance directive. “I was putting together an advance healthcare directive for myself. This way, my doctor will know what I want in terms of life-support treatment if I am, say, in an accident. You never know. Something could happen tomorrow! I was wondering, what do you think about CPR? Or ventilators (breathing machines)?”
Being a good son/daughter. “I have something on my mind I’ve been wanting to ask you, but it’s kind of uncomfortable to talk about. Still, I feel like we should. I wouldn’t be a good son/daughter if I didn’t find out about your wishes concerning end-of-life care. You might not be able to speak for yourself. It would help me now to know what your preferences are so we can be sure they are followed.”
A news story. Find something that comes up in the news. It could be about a problem due to a lack of directive. (For past cases in the news, Google “Nancy Cruzan” or “Karen Quinlan.”) Conversely, you might talk about the advantages of planning ahead and letting your wishes be known. For instance, “Did you know that Senator John McCain died peacefully at home? No hospital? No tubes or machinery?” The same is true for Senator Ted Kennedy as well as Presidents Ronald Reagan and George H.W. Bush.
Responding to resistance Here are some common ways people tend to deflect when someone brings up the subject of advance directives and end-of-life decisions:
“It’s too painful to talk about. Besides, talking about it is bad luck.”
Don’t challenge this belief. Respectfully acknowledge your loved one’s discomfort with the subject. Then try sharing that you are distressed at the prospect of the guilt you will feel if you are called upon to make decisions on their behalf, wondering if you made “the wrong decision.” Suggest the two of you come back to the subject in a few days. Planting the seed and letting the subject rest gives your loved one some time to get used to the idea.
“It’ll be okay. I’ll beat this thing. We don’t need to discuss life support.”
Denial is one of many ways people cope with problems that seem overwhelming. It can be a very important strategy for a person who is facing a serious illness. Still, you do need to know their wishes. Try framing your need for a conversation in the context of “just in case.” In a gesture of unity, you could offer to work on your own e same time they work on theirs. Everyone needs an advance directive.
“It’s all in God’s hands.”
Those who are religious may believe the moment of death is out of our control. Whether or not you agree with these beliefs, you can affirm your relative’s conviction and still point out that “God has given us the responsibility to determine how we live up until death.” Then you can share your need to know more about your family member’s wishes.
Consider a family discussion
Instead of focusing on one person’s specific wishes, you might initiate a discussion in which everyone shares their wishes. Everyone is entitled to their own desires. It’s not a debate. But each of you sharing your thoughts lets everyone know who leans more toward lots of intervention with a focus on length of life, and who leans more toward minimal intervention with more quality of life. It also removes the sensitivity of one person being on the hot spot and acknowledges that we all have to address these issues.
Marsha recently helped our family navigate a tough situation with an aging family member by helping us understand our options and the financial implications of each in a very clear way. We are extremely grateful for her knowledge and support!
Recently our family had to make some tough decisions about my Mom’s care. She has advanced Alzheimer’s and needed to move from the facility she has been living in, but to where? We spoke with Marsha Rains and she helped us a great deal. She has much professional as well as personal experience working with elderly people and their families. She listened not only to “ the facts” that we needed to express, but also to our feelings; in fact she encouraged us to express how we were feeling and what we really wanted for Mom at this point. After she listened and understood the situation AND our feelings she was very informative and she objectively offered us good suggestions in a kind and understanding way. She helped us make - with confidence- what we believe is the best decision for Mom at this time. I am very satisfied and grateful for Marsha’s help and will not hesitate to call again if we need further help in the future.
Marsha was extremely helpful in addressing our questions and concerns. At the end of our discussion, we definitely had a plan of action. She was frank, yet tactful and sensitive at saying what needed to be said. We recommend her to any families dealing with care taking of elderly ones.
Marsha is the calm in the storm. My stepmom fell and broke her back. I was spending 10 hours a day at the hospital, trying to work full time, and take care of my diabetic dad. I was completely lost and overwhelmed with all of the decisions that needed to be made, and didn’t know where to start, or who to trust. The guidance and explanations Marsha gave me were invaluable. I can’t thank her enough for her wealth of information and explaining what the options were and what to realistically expect.
Marsha Raines; Founder & CEO of Aging Well (Rochester, NY) is the woman that you need to consult with, if you have ANY questions regarding the broken, complicated, frustrating (understatement) & absolutely soul bending/breaking experience of having to care for your elder sister/brother/mother/father/aunt/uncle etc......in Rochester, NY (& likely nationally).Marsha's a "no bones, no hassle, get the job done," down-to-earth, honest, straightforward kind of business woman and she saved MY butt when it came to a serious communication breakdown between the ONLY facility that had occupancy availability for my elderly Mother.She works within an integrity level that is rare, by today's standards of what is professional.I cannot rave enough.....about her. If you are in need of someone with 35 years of experience in this radically changed & continually changing environment of healthcare for the elderly, I cannot think of anyone more qualified than Marsha Raines. I am very grateful to have made her acquaintance.
While searching for a reputable organization to perform a PRI for my 95 year old Dad I reached out to Aging Well Rochester.Marsha Raines returned my call immediately (I left messages with others and waited a few days) she put me in touch with her nurse Jodi Limner who scheduled a no non sense quick appointment at a very reasonable cost (others had a higher price plus travel charges).I would highly recommend Aging Well Rochester with your elder care!!
We were overwhelmed with choices and had more questions than answers when faced with moving a family member into assisted living. Marsha helped tremendously to prioritize our actions and narrow our choices. She answered all of our questions and put us at ease. I highly recommend her.
Marsha was so helpful during the time when my elderly father was ill. Every time I reached out via email or voice mail, she returned my messages almost immediately, within the same day, even when it was after working hours. She helped my family cut through the conflicting information that I was getting from various sources regarding elder care in the Rochester, NY area. I feel that we were able to save time and focus on the important things after meeting with her. So grateful.
My conversation with Ms. Raines was extremely useful. My life presented an opportunity to learn very quickly about assisted living options in the Rochester area. After a detailed conversation, she was able to recommend three sites which fit our needs. Without her help, we'd still be looking at sites and not be able to focus our efforts on the details of actually moving.
I continue to be so grateful for the care and expertise that we received from Marsha, Sue, Ester and the rest of the team at Aging Well Rochester for our Mom. It was such a relief to know that we could count on them to provide kind, warm support to all of us. The other thing that was so important was their knowledge and understanding of the different options available to us and the best ways to work with other professionals in the field of elder care. We can’t thank them enough!
Marsha was a HUGE support in helping our family find quality care for my Mom who has Dementia. She took the time to answer our questions and concerns with respect and compassion. I am glad that we got to meet with her. She’s put a lot of my family’s concerns at ease and is always there if we need her. I wish more people acted with kindness such as this in the medical field - the world would be a better place!
Thank the good Lord that my wife researched and was able to find Aging Well Rochester and Marsha Raines when my daughter suffered a serious stroke. We had moved to Florida three years earlier and it was not possible to visit her and help with the needed healthcare management.Marsha and Jodi were there to guide us through the process to insure that she could be placed in a facility that could properly provide the care she needed. Given the healthcare crisis in this country, this was not an easy process.They were there each step in securing the best possible care and provided relief from the guilt we felt being so far away from Rochester. The compassion and professionalism of Marsha and Jodi were second to none. We are so very grateful for the service they provided throughout.
I reached out to Marsha @ Aging Well Rochester at a critical point when my dad was hospitalized and needed advice and assistance with coordinating next steps. Within 48 hours, I had had an in depth initial consult with Marsha, agreed to retain her services, and she made calls and was able for me to put in motion a tour and his eventual placement at a wonderful and caring Hospice facility.After my dad's passing, Jennifer worked with my mom over the next few months as she adjusted to all the changes. She was kind and compassionate and very knowledgeable on the process my mom was going through.I would recommend Aging Well Rochester for straight forward advice and counsel to anyone who is feeling "lost" in the confusion and maze of options with aging loved ones.
Marsha Raines provides much-needed assistance navigating a complex system during high-stress times. She is excellent at what she does. She asks important questions, listens, is efficient and very dependable.
Our family worked with Marsha Raines of Aging Well Rochester at a crucial moment when our mother was experiencing a decline in her physical capacities after living on her own for most of her adult life. Marsha was our guiding light throughout the process: explaining, with compassion, the various options for Mom; guiding us through the application process for both rehab and long-term care; and ultimately, settling Mom in at her wonderful new home where she is safe, comfortable and happy. I wholeheartedly recommend Aging Well Rochester!
Was connect with Marsha from Aging Well Rochester while searching for assistance with understanding the system and what is needed for elder parent. Marsha provided me with information, guidance, and took the time to explain differences between assisted living, independent living, and what questions to ask while interviewing for a new home for my mother. Valuable information. Marsha continues to follow up to assist if needed. Very pleased and so glad found Aging Well at a crazy time.
Coming to grips with a parent's decline and figuring out how to meet their needs can be a terribly stressful ordeal. Marsha and her team made it vastly less so. Marsha's calm demeaner, wisdom and professionalism were invaluable during the 8 months during which my father's needs were rapidly changing. She has a wealth of knowledge about resources available in the community and was able to bring them to bear quickly. I will be eternally grateful for the emotional support she provided during the entire journey.
At a time when you don't know what you don't know, Marcia knows! She asks the right questions, narrows the choices, and provides direction. She definitely helped us feel more confident as we moved forward, and she was thoughtful enough to follow up to be sure we were making progress. Highly recommend.
Marsha's experience and knowledge are invaluable to our family during this difficult time! We can now take the necessary steps for our parents' care with confidence. Extremely helpful!
Marsha and staff were exceptional in their guidance though the difficult and unfamiliar journey of finding quality care for our aging parents. For over three years, they were able to anticipate needs, advocate for our parents, and provide support for them through various crises. We are so thankful for their expertise and compassion through all the changes. We highly recommend Aging Well Rochester to anyone seeking help with aging loved ones.
I just want to thank Aging Well Rochester for their assistance to complete an urgent PRI for my stepmother and also one for my father in case we needed it. The nurse went above & beyond to do that for us as we fortunately found a bed quickly for my stepmother. All went well & she is now receiving wonderful care at St. John's Home. Thank you Marsha and your staff - you made a difficult situation much easier.
Marsha Raines was incredible--responsive, caring and very knowledgeable. She helped me navigate options and provided excellent counsel. I highly recommend Aging Well to you if you are facing a difficult and emotional situation with a loved one who needs ongoing medical/rehabilitation placement and services. Marsha exceeded my expectations. Christine L.
Our initial consultation with Marsha Raines was very informative as it provided our family with a starting point concerning a long term care plan for our aging father. Her knowledge, experience and compassion allowed her to assess where each of us were in dealing with the emotional stress of the situation and provide recommendations to get us moving in the right direct with a long term care plan. Marsha helped us narrow our focus to ask the right questions regarding our next steps in care for our father. Thank you Marsha!
We were exceptionally fortunate to have Marsha Raines of Aging Well Rochester assist us in placing my wife in an appropriate facility. She guided me through all the paperwork, answered every question I had and resolved every impediment that we found in the process!Thanks so much Marsha!
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Our family reached out to Aging Well Rochester for an understanding of the options and to seek clarity as to next steps for our elderly father regarding his future care. Marsha provided our family with the assistance, guidance and resources necessary to make a decision that was best for our father. Marsha's response to e-mails and phone calls was always in a timely manner and we truly appreciated all of her knowledge and expertise and would not hesitate to recommend Aging Well Rochester!!
Marsha understands the world of aging and the decisions that need to be made. She has both the education and experience to navigate a complex system to secure the best care as well as the expertise to guide throughout the process. My wife and I are grateful for her depth of knowledge, experience, skill, and compassion. We plan to use her as a resource for years to come!
Marsha Raines and her team have been a gift to my family. I'm on the West Coast, and her local knowledge has been extremely valuable in locating care options and knowing what to look for. Her direct style does not shy away from talking about tough issues, and in fact, makes it easier to devise a care plan. Marsha is a gem.
I truly appreciate the advice Marsha has to share. She has a great way of putting things into perspective and knows her stuff! Thank you for the advice, help, and input while trying to figure out the next steps with my parents.
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Marsha level of expertise in this field has been tremendous. She explained the changes that occurred in the nursing homes industry. She took the time to research nursing homes for me and this afforded me time to focus on my mother's medical needs. I found Marsha to be resourceful and committed to helping me through this difficult time. I would highly recommend her service to you.
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Marsha Raines assisted our family through the most trying time of our lives with Mom. She was extremely knowledgeable about placement, finances local care available and placement. She was personally involved in contacting the care facility to assist in mom getting placement.Her recommendation of the Presbyterian Home was spot on. All grants recommended came through and we were able to continue her care until she passed away.Thank you Aging Well. I would recommend her services highly.
My parents needed more assistance than I could give working full-time in another state in 2015. They were facing medical issues and needed to move out of their beloved home of 60 years. Since then, Marsha and her team have been instrumental in supporting my parents, and me, through good times and bad. They arranged movers, set up and attended doctor appointments, arranged for aides and companions to assist my parents in living safely and independently, and checked in on them to be sure they were comfortable and happy. Marsha has been an incredible resource to me, providing information and advice when needed in a direct yet sincere manner. I feel relieved to know that Marsha is there to help when I can’t be, keeping me informed, and checking in when needed. She is an incredible resource and advocate for the elderly and their families.
I contacted Marsha two weeks ago. I quickly learned that a PRI, exam to determine the level of care was needed to go into a nursing home. I was given 10 local agencies that could do it. I chose "Aging Well". Marsha was so personable on the phone, getting all the fact. She was able to arrange the exam in 5 days. The nurse showed up on time and my aunt chatted away. Two days later I got an urgent call from my aunt begging me to find her a new place immediately, she had a horrible weekend and wanted out. So, I called Marsha back that same day and asked her to take our case on and help get my aunt placed ASAP. She was pleased to help. She sent me the 3 applications to the facilities my aunt wanted by the end of the day. She kept in close contact with me the next couple of days with words of encouragement while I scrambled to get the information. I submitted the first one. Marsha personally went into the facility and spoke to the intact person giving her more details of my aunt. 5 days later, I moved my aunt into the facility she wanted. Here is a photo of her reaction. Marsha is focused, very knowledgeable, explains the process well, upbeat and is very encouraging. I would work with her again in a heart beat. She is the best.
I have been working with Marsha since 2008 planning for the aging process and various transitions for my parents.She has always been incredibly helpful, knowledgable and available. Over the years she has grown the organization, but still maintains that level of support. Her manner is caring and supportive yet direct, a quality that I have found very comforting and helpful during stressful transitions. I can't recommend highly enough.
Aging well Rochester did an AMAZING job of helping my family deal with my experience and Hospitalization with Covid 19. Marsha worked with my children and family and the hospital staff to make sure that I would receive the care needed upon my return home. I can't thank them enough for making this experience as easy as it could be.
Living more than 500 miles away from Rochester, visiting my mother as often as we would like was a challenge. Luckily I found Marsha Raines and her colleagues at Aging Well Rochester. Their visits to my mom were so frequent and warm that the staff at the nursing home thought they were family! Actually that's how we think of them. In addition to the care and support for my mother, the feedback and advice Marsha and her colleagues provided us was always timely and helpful. I consider the day I found Marsha to be one of my luckiest. I can't imagine the last few years without Aging Well Rochester! Thank you for enriching my mother's life and ours.