No one likes to think about a time when they may not be able to speak or make decisions for themselves. But it can happen to anyone. At any age. And without warning!
In the case of serious illness
For those with a serious illness, it’s especially important to have a family discussion. Often several. This way everyone has a good idea about which life-support measures would be desired and under what circumstances.
It’s about values
The crux of the matter is to be sure that family members understand your loved one’s priorities. What does he or she consider a good quality of life? Are there situations that your relative would consider worse than death?
Conversations and documents
Talking is the first step. It will help avoid family conflict later. It will also help remove any feelings of guilt or worry on the part of the person chosen to make decisions. After the conversations, the next step is to have your loved one’s wishes written down. And then to communicate them to his or her doctors.
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Questions to consider
The end of life is a very tender time. It’s a journey a family will make together up until the point that your relative needs to let go. Those last steps of the journey your loved one will need to take alone.
Toward the end, we are not usually conscious, however, or able to speak or think clearly. This is why it’s important to discuss the issues, especially with the person appointed to make decisions. Below are some questions to consider.
What would a “good death” look like?
This might sound like a strange concept. But really, all of us are going to die. We may have fears that comprise our image of a “bad death.” But what about a good death? What would an excellent passage be like from your relative’s point of view?
While he or she still has the ability to talk—hopefully weeks or months before the need is urgent—you might ask about personal preferences. Before talking about life-support issues, it’s good to know what your relative would consider a “good death.”
To the extent that your loved one can imagine ahead of time,
wherewould he or she like to be?
At home? In a particular room? In the hospital?
whowould he or she like to have present?
Are there friends or relatives your relative really wants to have at the bedside? Or is this a very private, solitary time?
whatis happening in the room?
Are there particular activities going on? Is there music? Are there candles? Prayer? What does he or she envision during those last days?
are there any special concerns?
Is there anything that is particularly frightening or worrisome when thinking about those last few days? Anything to be sure to avoid if possible (for instance, being in pain or being cold. Perhaps fears of a dark room or being alone…)
In the weeks and months ahead of time Backing up from the end of the journey, what about care in the last weeks or months? Your loved one will likely be able to participate in conversations and activities. At the same time, he or she will tire very easily. Your relative will also start to need more and more help. It’s not usually possible to live on one’s own during the last few months.
Who is involved in day-to-day care?
Are there people your loved one wants to have helping with things like meals? Bathing? Dressing? Anyone he or she would prefer not be involved?
How much information does your loved one want to know?
Some people want to know everything that the doctor can share. Others don’t want to hear facts and figures. They would prefer not to be told projections about how long they have or chances of survival. There is no right or wrong with this. You just want to find out what your loved one is most comfortable with. Then you can structure care and decisions to match.
How involved does your relative want to be in medical decision making? Again, some people want to make all the decisions themselves. Others prefer to have the doctor decide what’s best. Some are most comfortable having a particular family member take the lead. Many times, shared decision making involves all three: the doctor, the patient, and a family member. Ask your relative what he or she would prefer.
Shifting from cure to comfort
If your loved one has an incurable illness, somewhere in the journey a decision will have to be made. Treatments in hopes of a cure will no longer be helping. They will simply be draining energy and taking up time that could otherwise be spent creating sweet memories. It might be helpful to read our article about quality of life to help your loved one talk about his or her wishes.
Is there a point when the shift to comfort care would be preferable?
Any particular circumstance come to mind for this?
Are there particular goals or activities that are especially important? Once your loved one acknowledges that time is limited, there may be a few things he or she wants to accomplish. It could be going to a grandchild’s wedding. Or reconnecting with an estranged family member. It doesn’t have to be an exotic event to be on the bucket list. Simply ask what he or she would like to do most with the time that remains.
When the end is near We will all cross the threshold, leaving the land of the living. As the body closes down, there are things that can be done to keep your loved one comfortable. Absolutely! There are also things that can be done to postpone death. In advanced illness, nothing will prevent dying. We will all die at some point. But life-support systems are available that can bolster a failing body. They are not without their drawbacks, however. We will go into detail about them later.
In a general way, ask your loved one:
Would he or she prefer to have everything done to stay alive, or prefer to be kept comfortable and allowed to drift away? There are, of course, shades of gray in the middle. But most people lean toward one or the other of these approaches.
Who should make the final decisions? Since your relative will most likely not be able to talk and could be sleeping most of the time, whom should the doctors turn to for decisions about life support?
All these topics are not likely to be covered in a single conversation. There will probably be several different conversations. And your loved one’s ideas might change over time. But this is a good start for getting everyone on the same page in terms of understanding what your relative wants and doesn’t want in his or her last chapter of life.
When would be a good time to begin a conversation like this?
Write it down
The next step is to put your loved one’s wishes down on paper. The legal document that expresses these wishes is called an “advance directive.”
An advance directive is a legal document that conveys a person’s health care wishes should he or she not be able to speak. Each state has its own approved form. In case your relative is in a different state, here is the link so you can download an advance directive from any of the 50 states. (The form in our state may not be valid in the state where your loved one lives.)
Two parts An advance directive is actually made up of two documents:
The living will
This document describes your loved one’s basic wishes about life support: Comfort care only. Limited intervention. Full support (keeping him or her alive at all costs). The living will describes which procedures he or she wants. It can also outline what your relative doesn’t want.
The medical power of attorney This document allows your loved one to appoint a health care decision maker. (Sometimes this person is called a “health care proxy,” “health care agent,” or “health care surrogate.”) The health care decision maker is called upon to make decisions only if the doctors have determined that the person you care for can no longer do so him- or herself.
Changing an advance directive
Once the advance directive is signed, it becomes a legally valid document. It does not expire. It can be easily changed, however. No need for lawyers to be involved. If your relative wants to create a new one, it’s easy. Download a new form, complete it, and distribute it to the decision-makers, the lawyer, doctors, the hospital, and other family members. The newer document will supplant the older one.
What obstacles are in the way of completing an advance directive?
It’s important to choose carefully when selecting a health care decision maker. Selecting a spouse or partner— or even a sibling—may be tempting. But when the time comes, a peer may have their own health issues, or may no longer be living. The oldest child is a common choice, but that isn’t necessarily the best match for the job.
Your relative should pick someone who is
willing to listen. Someone your loved one can easily talk to about life-support issues. It’s critical that this person be able to put aside his or her own preferences. The decisions should be based on your loved one’s values and wishes.
willing to act. Someone levelheaded. Someone who will advocate on your relative’s behalf. Who is not afraid to ask questions or demand answers. Who can make difficult decisions, especially under pressure. Who won’t be intimidated by other family members. (Ideally the decision maker will be someone who can be firm and yet communicate diplomatically, encouraging others to rise to their wisest selves.)
nearby and available. Someone who lives relatively close by. Also someone who could readily shift their responsibilities to get to your loved one in an emergency.
Keep in mind that
the doctor cannot be the health care decision maker. Ideally, the health care agent is a friend or family member. But best not to choose someone out of guilt. (And when working with your relative, be open and understanding if he or she does not choose you.)
there should be at least one back-up person. When the time comes, it could be that your loved one’s first choice is not available. For such a case, your family member should name one or two others. Do NOT make them co-agents, however (which means the two have to come to a decision together). Having co-agents proves difficult if there is a disagreement.
Who are some likely candidates for becoming a health care decision-maker?
This is the focus of the living will. No one can know exactly what their ultimate choices will be. But in this portion of the document, your loved one can describe his or her basic feelings about the different methods of life support. This will provide very useful guidance for the doctors and the health care decision maker.
Providing a temporary bridge?
If a person has a curable condition, these life supports can be very helpful on a temporary basis. They give the body a chance to heal. Once your loved one is strong enough, then the intervention can be stopped. Health will have been restored.
Prolonging the dying process?
In the case of a terminal illness, however, life-support measures often just prolong the dying process, simply postponing a death that is inevitable. This may be useful if out-of-town relatives need time to travel to say good-bye. But these measures are not simple. They often have risks and side effects. They aren’t the easy fixes that are often portrayed on television. Plus, starting life support automatically introduces the awkward question of when to stop.
How to decide?
It’s always useful to start by reviewing the facts for each intervention.
What are the benefits? Does it relieve suffering? Help the body heal and regain function? Enhance quality of life?
What are the risks? Is it painful? Are there side effects? Does it increase the chance of infections? Does it subtract from quality of life?
How likely is it to cure the problem? Will it enable your loved one to return to a reasonably healthy state? Does it simply prolong dying?
What are your loved one’s spiritual or religious beliefs? If your relative follows a particular faith tradition, these values will also become part of the decision.
Facts about commonly used life-support measures are described below. They may sound rather grim and extremely final. Remember, the situation will be very different from where you are now in the present moment.
What do others think?
These decisions are very personal. Still, sometimes it helps to hear what others think. No one should feel pressured to make a particular choice. Hearing what others think, however, can help your loved one clarify his or her own response. To that end, after sharing the facts about each life-support measure, we have included a sample opinion in italics.
There is no right or wrong answer!
And there are many shades of gray. The important part is what your loved one feels is right for him or her. While reading the sample opinion, ask the person you care for to consider:
Do you agree? Disagree?
How might you change that statement to better fit your opinion?
Here are the most common life-support measures:
CPR (Cardiopulmonary resuscitation)
Many of us have seen television dramas in which the team does CPR and brings the patient miraculously back to life. In the context of a generally healthy person who suddenly has a heart attack, CPR can result in years or even decades of healthy, active living. In the context of chronic or terminal illness, though, it’s a very different picture. Studies indicate that only about 15 percent of people advanced in age or illness leave the hospital alive after CPR. In other words, 85 percent die in spite of receiving CPR. Those people who do get CPR and survive often suffer from broken ribs as a result of the process. Although CPR could mean the difference between life and death, it is not a gentle procedure. And it could end up being a very traumatic way to die.
How might your loved one modify this statement?
“I only want CPR if I have a reasonable chance of recovery to a healthy state. For instance, if I have a sudden heart attack but have been healthy enough to lead a fairly functional life, do CPR. If I am sick with cancer, however, and my heart stops, do not do CPR.”
Ventilator (breathing machine)
A ventilator is a machine that helps the body breathe. It forcibly pushes air into the lungs through a tube inserted down the throat. A ventilator can keep a person alive when the lungs have stopped breathing on their own. Ventilators are commonly used for a short time after surgeries. They can also be used for long-term chronic conditions. They do, however, severely restrict one’s ability to move or talk. Patients remark that they are very uncomfortable. The machine’s rhythm does not necessarily sync well with the patient’s natural breathing. Coughing or crying, for instance, is difficult on a ventilator. The machine forces a regular breathing pattern. It cannot accommodate variation. The tubes themselves may cause pain or discomfort. It is also quite common to get a lung infection while on a ventilator. Ventilators used near the end of life rarely lead to a full recovery. More often, they prolong the moment of death. Choosing this course may be appropriate if family members need time to arrive from far away. Depending on the condition, a person who needs a ventilator but goes without it usually dies within minutes or hours of its removal.
How might your loved one modify this statement?
“I would be willing to go on a ventilator for a limited time. Say, four days. This is if the doctors felt I just needed a little help to get over the hump. Then I could breathe on my own again. If it’s determined that my body will not breathe on its own off the ventilator, I want to be taken off.”
Antibiotics are drugs that are used to fight infection. They are very good at fighting disease. Antibiotics also can cause side effects. Rashes and nausea are common. If a person has an infection that is causing pain, antibiotics can provide comfort by curing the infection. Depending on a person’s general state of health, antibiotics may help him or her survive. Many people who are seriously ill get infections on top of their other conditions. (For instance, people with advanced dementia frequently get pneumonia.) In cases of dwindling health, an infection may simply be the last straw. Without antibiotics, a person who is seriously ill could die within a few hours to a few days. It’s usually a very peaceful passing.
How might your loved one modify this statement?
“If I have a terminal illness and get a painful infection, give me antibiotics. I don’t want them as a means to prolong my life. They are okay as a way to keep me pain free. On the other hand, if I have a terminal illness and also contract a painless infection like pneumonia, do not give me antibiotics. Pneumonia is a reasonably easy way to die. I’m going to die soon anyway. Let me go peacefully.”
Tube feeding can provide a balanced formula of nutrients if a person is unable to swallow. A tube can be placed down the nose and into the stomach. Or a tube can be inserted surgically through the abdomen. Tube feeding can be a short-term solution to a sudden illness. It is also used to help people who are in a coma. Or for a long-term condition, such as advanced dementia, when eating can be difficult. Tube feeding can be a source of infections. It can also be very bothersome. People with advanced dementia frequently try to pull out the tube. Sometimes their hands have to be tied to the bed to keep them from succeeding. Near the end of life, artificial nutrition prolongs the dying process. Without artificial feeding, a seriously ill person who is naturally no longer able to eat will die painlessly in a matter of days or weeks. People who intentionally decide to stop eating report that the feeling of hunger goes away after the first 24 hours. Many report a blissful feeling once they stop eating. It appears to be a peaceful passing.
How might your loved one modify this statement?
“I dislike the idea of being kept alive with tubes. I want my dignity to the very end. At some point we all need to go. If I am unconscious or am not eating for some other reason, do not prolong my life through artificial feeding. Let nature take its course.”
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!!
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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.
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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.
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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.
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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!!
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