ADVICE TO THE LIVING ABOUT DYING
To Do the "Right Thing"
Dear Marcy,
My father lives in North Carolina and I live in Rhode Island. He is currently on hospice and is still able to make his wishes known. I am his primary caregiver and health care proxy and I want to do it right.
The responsibility to making decisions for him is scary. How can I be sure that I am doing the right thing for him?
Scared in NC
Dear Scared in NC,
Getting it "right" the last time is an opportunity that is available to all. A little planning, a few discussions with honest sharing and respect is a start. Gratitude always helps too. And for the record the definition of gratitude is the quality of being thankful; readiness to show appreciation for and to return kindness. At the end of life, appreciation can provide shelter from the suffering of a lifetime.
We are often asked by families that want to get it “right" what to do and say. For every family it is different. Honoring your loved ones wishes and listening without judgement or criticism are good starts.
Doing the “right” thing for your father is allowing him to live this last phase of his life his way….not the way you think it should be done. Let him direct his own destiny for as long as he is able.
Pay attention to his wishes and support him in those wishes. Remember to include him in all decisions as long as he is able to participate in his own care. At the end of life often there are so many losses. The loss of autonomy should not be one of them. Meet him where he is not where you are. Being in the present with him is healing. He might want to talk about his illness, death, life, dreams, successes and failures….or not. If you are able to listen without correcting or judging you will give him a precious gift. And you will perhaps learn more about him and you in the sacred space that you help to create.
I wish you well and respect your desire to do “the right thing” for your Dad. Pay attention and remember the “being with” is often more healing than the “doing for” a loved one.
Yours truly,
Marcy
How to Talk about Hospice and When to Begin
Dear Marcy,
When is it a good time to begin hospice?
How do you market it to those not ready to admit they are at end of life; even if their body is filled with metastatic cancer cells and they have declared no more chemotherapy??
Curious,
Scarsdale, NY
Dear Curious,
When is it a good time to start hospice is a very good question. As you probably know hospice is a Federal entitlement benefit. In order to receive this benefit one needs to have a prognosis of six months or less to live. The person you described would certainly qualify based on that information. There are other criteria too such eligibility for Medicare or Medicaid, no further curative treatment, etc.
It is a good time to begin hospice when the patient is ready to accept their prognosis. One very important issue for people who have a terminal diagnosis is fear of death and/or dying. Another is autonomy. For some, denial is a good coping mechanism. For others, accepting hospice means giving up hope. My experience as a hospice social worker was that people want the benefit, they just don’t want it to be called hospice.
When talking to people who qualified to receive the hospice benefit, I would often ask people is they wanted to have a registered nurse come to their home at least once a week...for free. The answer was usually yes. I would then ask if they would like to be able to stay in their home and have other services come to them such as home health aide, pharmaceutical deliveries, social worker, volunteer etc. And again they reply was usually yes. I would also inquire if they wanted assistance with pain management and again yes, yes, yes. When I would say that this benefit was called hospice, they were often still leery. When they learned that they could disenroll at any time to receive curative treatment, they became more interested.
Often people equate hospice with a death sentence. I have seen numerous people discharged from hospice because their prognosis changed. Sometimes their prognosis changed because of the additional support hospice provided. I once discharged a 101 year-old woman who was admitted to hospice with a diagnosis of Adult Failure to Thrive. She had stopped eating and had lost over 10% of her body weight in a few months. She would die if this weight loss continued. After 7 months of hospice service she had regained the weight she had lost plus some and no longer met the hospice criteria.
I tell the above story because it corrects the myth that hospice is a contract, mandating that one must die within 6 months. This knowledge allows people to be admitted to hospice and still maintain hope.
For some people it is just too hard to admit that they have a terminal disease that will eventually kill them. It is important to have the hospice conversation perhaps framed by what you would do in the same situation, instead of what they should do. However remember that it is equally important to meet people where they are. Sometimes the validation that comes with being heard is enough for a person to see other options. Sometimes it is not.
I hope this information was helpful. Please do not hesitate to ask for any clarification.
Yours truly,
Marcy
When? When? When?
Dear Marcy
My 92 year old father is living in a nursing home and is failing. I have asked the staff to help me know how close his time is. Nobody will answer that question. Can you help? He has dementia and high blood pressure. He recently had a urinary tract infection and is now lethargic. His diet has been downgraded to pureed and he eats little. Please help me to know whether his death is near. I am losing sleep because I do not know.
Thank you,
Sleepless
Cincinnati, Ohio
Dear Sleepless in Cincinnati,
One of the most asked questions in hospice is “when”. The question cannot be answered accurately until a person is days or weeks away from death. Medical research has shown that without food and water, a person cannot live much longer than two weeks. Of course there are variables but two weeks is generally considered the longest the body can sustain life without food and water. Worrying about when death will occur, can rob you of the ability to be present with your Dad. According to Lewis Thomas, “ We are, perhaps, uniquely among the earth’s creatures, the worrying animal. We worry away our lives, fearing the future, discontent with the present, unable to take in the idea of dying…”
Often the fear of death limits the opportunities afforded at the end of life. The nearness of mortality touches our very soul and the result is often fear supplanting love. When fear becomes the headline, love takes second place.
The question that your question brings to mind is why is it important to know? If there are long distance family and friends who need to be informed, I recommend The Dragnet approach. Tell them “just the facts”. They can make their own decisions about visiting or not. If you need to know to make plans, buy trip insurance because there is no answer to your question. If you want to take time off from work, do it. Don’t wait because the truth is at this juncture, nobody knows.
The question is how would you proceed differently if you knew he was dying? He is 92 years old with a several medical challenges. There is a good probability that he will not live for another 10 years. Knowing that he has a life limiting disease, explore your own fears and feelings. This will free you to be present with him at each visit. This will free you to enjoy the time you have left together. This will enable you to sleep soundly each night.
Yours truly,
Marcy
To Tell or Not to Tell that is the Question
Dear Marcy,
I do not know what is the best thing to do for my mother. My father died recently and my mother is 86 years old, lives in a nursing home and has dementia. She is confused and can only speak a few words in a day and often they do not make sense. She has short term memory loss and only recognizes myself and my siblings. My sister thinks we should tell her and my brother thinks that it will cause her more suffering. Should she be told and if yes how?
Confused,
Seattle, Washington
Dear Confused,
I am truly sorry for your loss. It sounds as if you all want to do the "right" thing for your mother without regard for your own needs. I have found that the best way to assess her "need to know" is by her actions and words if possible. People with dementia often live in the moment and cannot remember from one moment to the next. If she is told she might suffer the loss over and over again when retold. She may not be able to process the information or express her feelings which may cause distress and frustration for her. My experience has been to tell if the person with dementia repeatedly asks and/or seems to be acting differently than before the loss. When and/if your mother asks, I would tell her that dad is away or dad sends his love or dad is safe or okay. Use your own words to reassure her however if she is constantly asking then it is important to either tell her yourself or have a trusted friend or family member tell her.
Yours truly,
Marcy
Dear Marcy,
My wife is being admitted to hospice this week with a diagnosis of liver cancer. She also has mild dementia and a history of depression. Although she has been told that she has cancer, she is in denial. My wife is not a curious person and did not explore the meaning of her diagnosis and her prognosis . My sense is that she would would not be able to cope with knowing that she has a life limiting illness. Our adult children believe that it is her right to know. What do you think would be the best way to go?
Anxious,
East Liverpool, O
Dear Anxious,
I can understand your concern for your wife's reaction to knowing that she has a life limiting disease. Sometimes the concern is a function of not wanting to witness a patient's response and not wanting to have the conversation. Her denial might be from her Dementia. I would have that evaluated before proceeding with a conversation with her.
In order to receive the hospice benefit the patient (assuming capacity) has to sign a statement choosing hospice care instead of other Medicare-covered benefits to treat her terminal illness. It is the responsibility of the hospice admission team to explain the eligibility criteria to her which is having a prognosis of six months or less to live. If this did not happen, I would speak to her physician or hospice team to coordinate the best way to tell her that she has a limited life span. After she has been told (assuming her dementia is "mild"), it gives her and whole family an opportunity to have closure and to support each other.
Yours truly,
Marcy
Loss of Appetite
Dear Marcy
My husband has been diagnosed with Cancer and recently was placed on hospice. After years of managing the cancer, it is no longer in remission. He used to have a great appetite and now he hardly eats anything. I keep preparing his favorite foods however after a few spoonfuls he is stops eating. I want to keep him strong. I fear that if he does not eat, he will succumb to his disease sooner. This has been a bone of contention between us. He claims that I am always “pushing” food on him and that he will eat when he is hungry. I don’t want to give up on him. It is bad enough that he is dying. I love him and feel useless if I am not able to keep his strength up. What should I do?
Feeling Useless,
Minneapolis, MN
Dear Feeling Useless,
Allowing your husband to listen to his body, is not giving up. Loss of appetite is common for people at end of life. We tend to think of feeding as a way to nurture and as a symbol of love and caring. Cancer tends to block one’s desire to eat. As the disease progresses, it is normal to have less appetite. Food has less appeal and the body has less need for it. It is upsetting to see a loved one eat less, engage less, move less however, it is normal. These are signs that the body is slowing down. Loss of appetite happens in 8 out of 10 patients before death, according to the American Cancer Society. (Remember, it is important to report all changes to your husband’s medical team.)
There are many other ways to nurture and show love to people at end of life that do not involve eating. Being present and providing a space for them to share what is happening to them honestly. This can validate feelings, fears and concerns. We can listen generously to them, sit quietly at the bedside, and perhaps engage them in life review. The most important gift we can give another person is the gift of acceptance for who they are now and what they are experiencing now.
It is also important to talk about your need to feed and give your husband an opportunity to share how he is feeling and what his needs are. I’m certain he deeply appreciates your caring and wishes he could eat.
Yours truly,
Marcy B.
Long Distance Caregiver
Dear Marcy,
My 71 year old sister is dying of colon CA. She lives in New York City and I live in Los Angeles. I would like to get her connect with some services there as she lives alone...well she has cats but they cannot ring callers in or go to the market for her. She says she is not ready for hospice yet but is moving in that direction. I would appreciate any pearls of wisdom you may have to share.
Long Distance Sister,
Los Angeles, CA
Dear Long Distance Sister,
It is important for people living with cancer to have some control in their lives since there is so much that they cannot control You are wise to take your lead from her and support and affirm her decisions.
There are many resources for services for your sister. If she qualifies for hospice she might be surprised to know that it truly is about quality of life not just quantity of life. Hospice does not mean giving up hope and certainly one can revoke from hospice if new treatment is desired.
New York City is fortunate to have The Doula Program to Accompany and Comfort which specializes in providing volunteers who visit weekly and provide support and friendship to patients who have received a life-threatening diagnosis. Their website is www.doulaprogram.org. Another resource could be the National Association of Professional Geriatric Care Managers to find someone to evaluate home care attendants and manage her sister’s care locally. Their website is www.caremanager.org. A gold mine of of good information can be found at www.incareofdad.com. Although it is was started as a one-stop, free resource for those trying to help their parents through a serious illness, the information transfers to all friends and relatives.
I wish you good fortune in your role of long distance caregiver. If I can be of further help, please contact me again.
Yours truly,
Marcy B
How to Choose a Hospice
Dear Marcy,
I live in a city that is served by more than one hospice. How do I choose one? What questions should I ask before making my decision.
In need of help,
Tampa, FL
Dear In Need of Help,
Although hospice is a Federal entitlement benefit which is under the supervision of Medicare, the quality and quantity of services provided vary.
All hospices provide a specially trained team and support staff available to help you and your family. The team will include: doctor, nurse, social worker, home health aide, chaplain, bereavement counselor and volunteers. The frequency of visits by each discipline can vary from hospice to hospice. Some might provide a home health aide for 20 hours a week and others for 10 hours week. It is important to know what to expect from each discipline.
One can get references from people one knows in the community as well as professionals in field (ie doctors, geriatric case managers, social workers, etc.). One's comfort level from talking to hospice admissions people should also be taken into consideration. Also check out their record for quick response to the need for a visit as well a s their respite care criteria and the location of inpatient options. Ask how the hospice will address your individual concerns and how it measures its own quality. Does the hospice have accreditation from JCACO or CHAP? Will there be limits of treatment currently being received by the patient and what does the hospice expect from the family?
The answers to the above questions should start to paint a good picture of the hospices you are considering. You will be an knowledgeable consumer if you interview hospices based on these questions. I hope the above was helpful.
Yours truly,
Marcy
Feeling Powerless
Hi Marcy,
My girlfriends mother is 87 years old, she lives alone in a retirement community that is a very nice place with good staff and every amenity including pool, art room, library etc. She was a swimmer all her life and used to swim 3 days a week up to a few months ago, she had many activities that keep her busy but lately she has stopped them all including not going down to dinner and eating with her friends.
She is a very well educated lady. I tell you this because she now has trouble remembering what she talked about and does not want her friends to see
that her mind is going. ( her words )
She told has told me that she is too old and wished to die which of course makes me sad and powerless. I have done some work with the Metta Institute but am new to working with the aged and the dying.
Thank you for reading my letter
May you be well.
Sad and Powerless
USA
Dear Sad and Powerless,
Although Metta and all of our other training is excellent, the skills don't always transfer when family and/or friends decline or get a terminal diagnosis. It is so hard to witness someone's suffering.
You wrote that you are feeling sad and powerless. Those are common and legitimate feelings. However there are some things that you can do.
1. Rule out medical causes such as over-medication, clinical depression, urinary tract infection, etc
2. Validate her feelings. If she is saying she is old and wishes to die, she might be wanting to be heard.
Telling her that you can understand her feelings now could give her comfort in that no one is trying to talk her out of her own feelings.
3. Make sure that her living will and health care proxy are updated while she has some capacity. It would be a shame if she was not able to direct her own end of life wishes.
4. Help her to find meaning and purpose. Perhaps you or your girlfriend can work with her on a legacy project like creating an ethical will or lead her in life review
through Story Corps which has a great list of questions that may be helpful at http://storycorps.org/great-questions.
I hope that the above are helpful. It sounds like you and your girlfriend are providing love and comfort to her mother. She must be a great lady.
Yours truly,
Marcy
Family Dynamics
Dear Marcy,
My 84 year old husband was recently hospitalized. He was diagnosed with a terminal illness. One of my adult stepdaughter’s wants to be alone with him for three hours because she wants to discuss “family dynamics”. In the past this has meant how he failed her and what a bad parent he was. Is this appropriate at this stage of life to subject him to her criticism? He has become agitated in the past when she starts this conversation. We don’t know what to do. Can you help us? Thank you.
Frenzied,
Minneapolis, MN
Dear Frenzied,
Discussing family dynamics at any time can be challenging however having meaningful conversations are always appropriate. Using this time to blame and rehash old wounds is not appropriate.
If your husband still has capacity I would advise you to ask him if he wants to have the discussion with his daughter. If not then it is up to the family to honor his wishes. Keep in mind that it is important to keep involving your husband in all medical and family decisions. If he is agreeable to privately talk to his daughter, you should allow it and embrace it.
I would encourage you to expand the conversation to a family meeting which could be facilitated by a professional social worker, therapist or neutral friend. The reason to have a professional facilitate the meeting is to make sure that there will be ground rules. These ground rules will help keep people on track while insuring that everyone is treated with respect and has a chance to speak without interruption or criticism. It may provide a forum for your husband to share his concerns and feelings as well..
Your truly,
Marcy
Visiting the Sick
Dear Marcy,
A dear friend of mine was recently admitted to hospice. He has pancreatic cancer. I have never experienced anyone close to me dying. What should I say when I visit him? I am very uncomfortable with visiting the sick and anxious about what to say. Please provide some guidance for me. Thank you
Uncomfortable,
Miami, Florida
Dear Uncomfortable,
It is not unusual to feel uncomfortable about visiting the sick and dying. We Americans are a death denying culture which makes the reality of it all the harder to accept. When someone who is dying, it is important to show up and to talk and listen honestly from the heart. Showing up and listening generously is your greatest gift. Be real, be sincere, non-judgmental and be present. Being present and open to what is happening is healing. It is not so much what you say but the fact that you showed up. Sometimes nothing needs to be said. Sometimes sitting with the person quietly and consciously is healing. There is no need to entertain. The need is to be with what is happening in the moment for your friend. Your friend may feel isolated and alone. Showing up for him and accepting what is happening to him will provide the support he needs..
Yours truly,
Marcy
Dear Marcy,
I have been diagnosed with Brain cancer and only have a few months to live. My family and friends are treating me with kid gloves and are trying to protect me from the ups and downs of their daily life. I am dying and feel isolated. I want to talk to my family and friends in an open way. They are so busy trying to protect me that I cannot have a normal relationship with them....and all I want is to return to a semi-normal life while I can still participate. What can I do?
Isolated,
Austin, Texas
Dear Isolated,
Dying people are often marginalized and isolated. There seems to be a conspiracy of silence around the subject of death. Friends and family are at a loss for words and therefore say nothing. Sometimes they are so busy talking and trying to make things better for you that they do not listen. People are often feel guilty, fearful and anxious about visiting the sick. They are uncomfortable because they do not have the knowledge of what to say or do. It can also trigger facing one’s own mortality.
Be patient with your friends and family and tell them what you need from them. It is hard to see a loved one decline. It is hard to process ones individual grief. Encourage them to visit and prepare them for what they might be observing. You can tell them that you are feeling isolated and need their support. Perhaps reassuring them that you are still the same person as before would help them help you. You might inform them of what they will encounter when they visit such as I am now wheelchair bound and/or sometimes am not able to respond fully to questions however I am still here and would value a visit from you. By letting them know what to expect and what you expect it will help to normalize a very challenging time in everybody's life.
Yours truly,
Marcy
Dear Marcy,
I am dying and feel isolated. I often hear whispering when I am near and sometimes the conversation stops when I enter a room. I am still me and am starting to feel like I am dead already.. My adult children are trying to make decisions for me and I do not want to argue with them at this time. What can I say to my family and friends to help them be with me?
Not Dead Yet,
Marblehead, MA
Dear Not Dead Yet,
Your dilemma is unfortunately a common one. In the misguided belief that not sharing feelings and concerns with a person who is ill or dying is "best" for the patient.
If possible gather them together and tell them what is important to you at this time in your life. Tell them how you feel and your need for dignity and respect at the end of your life. Tell them how you want ot be remembered and most of all let them know that you love them.
Yours truly,
Marcy
Advance Directives
Dear Marcy,
A friend of mine recently died after a short illness. We were all shocked to find out that she had not written down her wishes. Nobody knew what her wishes for medical treatment were and she did not have any family. It was a mess and I do not believe that she received the end of life treatment she wanted. It has made me think about how to make my wishes known. I am a healthy 36 years old who is single. I want to take responsibility and direct my own healthcare. I do not want to be at the mercy of a court appointed guardian.What should I be doing to insure that my wishes for my last days are honored?
Trying to be responsible,
Olean, NY
Dear Responsible,
According to the Associated Press in 2010, only 20-30% of American reported having an advance directive. You will be one of the minority in the USA who have Advance Directives. These directives such as living wills act to inform your health care proxy (medical power of attorney) of your wishes concerning your medical treatments going forward. They go into effect if and when you are unable to make medical decisions for yourself. To access an appropriate form please visit www.caringinfo.org for a state by state link to advance directives. There currently is not one form recognized by all 50 states.
You will need to appoint a Health Care Proxy (HCP) and preferably a primary and a secondary. Please note that if the first HCP is unable to act on your behalf they cannot appoint a replacement therefore it is wise to appoint two.
I hope the above was helpful.
Yours truly,
Marcy
Dear Marcy
I am starting to explore appointing a health care agent. What are the criteria for being a health care agent?
Mr. D.
Sonoma, CA
Dear Mr. D.,
Choose wisely by choosing someone you trust who is willing and able to make potentially difficult decisions about medical treatment for you. He or she can be a friend, family member or professional. It is important to discuss your desires, values, fears, and preferences about medical care in various situations. The more your agent knows about you and your wishes, the better prepared he or she will be to make health care decisions on your behalf.
According to WebMD, a health care agent is a person you choose to make health care decisions for you in the event that you become unable to do so. A health care agent can help make medical decisions on your behalf at the end of life or any other time you are not able to communicate, such as if you are severely injured in an accident. A health care agent also may be called a health care proxy or surrogate or an attorney-in-fact.
State laws vary regarding the specific types of decisions health care agents can make. In general, a health care agent can agree to or refuse treatment and can withdraw treatment on your behalf. Your health care agent can use the information in your living will (also called a treatment directive), statements made by you in the past, and what he or she knows about you personally to make these decisions. For example, your agent can consent to surgery, refuse to have you placed on life-support machines, or request that you be taken off life support.
It is also important to choose a primary and secondary agent. In the event the first agent cannot act in your behalf he or she cannot appoint someone to become your proxy.
Yours truly,
Marcy
Denial
Dear Marcy,
My Uncle George has a terminal illness and is on hospice. His wife is in denial. She keeps talking about trips they will be taking and going to the beach this summer. Every time my uncle starts to talk about the end of his life and what it is like being so limited in his abilities, she shuts him up by saying he is crazy....what do the doctors know, etc. Is there any way for me to intervene? He has no children and we have always been very close. I would like to honor my uncle's wishes to be heard by his wife.
Uncle George's niece ,
Suffern, NY
Dear Uncle George's niece,
Denial can be an excellent coping mechanism. If your aunt has always relied on denial as a way to get through her life then it is what she needs to get through losing her husband. Once a person goes on hospice it is pretty clear that they have a life limiting illness. In order to receive the hospice benefit two doctors must certify that they expect the patient to die within six months, if they continue on the same trajectory of decline. Since hospice provides an interdisciplinary approach to patients and family, I would ask the hospice social worker if she/he could arrange a family meeting with the team. At this meeting with the hospice team, a safe space for everyone to talk about their fears, hopes and feelings will be created. The nurse can answer medical questions that may arise. The Chaplain can address spiritual concerns and the social worker would facilitate the meeting to make sure that everyone present has the time and respect to tell their story. The social worker would prepare an agenda that might include topics such as how we got here, what does the patient need to have heard, how is the caregivers coping, financial, physical, spiritual and emotional concerns, etc. As well as setting the ground rules prior to the meeting. These would include no cross talking which allows each person to talk without being interrupted or challenged as well as confidentiality. Participants will be reminded to talk from the "I" not to point and say "you". A family meeting will give everyone a chance to be heard in a safe and nurturing environment.
Yours truly,
Marcy
To Do the "Right Thing"
Dear Marcy,
My father lives in North Carolina and I live in Rhode Island. He is currently on hospice and is still able to make his wishes known. I am his primary caregiver and health care proxy and I want to do it right.
The responsibility to making decisions for him is scary. How can I be sure that I am doing the right thing for him?
Scared in NC
Dear Scared in NC,
Getting it "right" the last time is an opportunity that is available to all. A little planning, a few discussions with honest sharing and respect is a start. Gratitude always helps too. And for the record the definition of gratitude is the quality of being thankful; readiness to show appreciation for and to return kindness. At the end of life, appreciation can provide shelter from the suffering of a lifetime.
We are often asked by families that want to get it “right" what to do and say. For every family it is different. Honoring your loved ones wishes and listening without judgement or criticism are good starts.
Doing the “right” thing for your father is allowing him to live this last phase of his life his way….not the way you think it should be done. Let him direct his own destiny for as long as he is able.
Pay attention to his wishes and support him in those wishes. Remember to include him in all decisions as long as he is able to participate in his own care. At the end of life often there are so many losses. The loss of autonomy should not be one of them. Meet him where he is not where you are. Being in the present with him is healing. He might want to talk about his illness, death, life, dreams, successes and failures….or not. If you are able to listen without correcting or judging you will give him a precious gift. And you will perhaps learn more about him and you in the sacred space that you help to create.
I wish you well and respect your desire to do “the right thing” for your Dad. Pay attention and remember the “being with” is often more healing than the “doing for” a loved one.
Yours truly,
Marcy
How to Talk about Hospice and When to Begin
Dear Marcy,
When is it a good time to begin hospice?
How do you market it to those not ready to admit they are at end of life; even if their body is filled with metastatic cancer cells and they have declared no more chemotherapy??
Curious,
Scarsdale, NY
Dear Curious,
When is it a good time to start hospice is a very good question. As you probably know hospice is a Federal entitlement benefit. In order to receive this benefit one needs to have a prognosis of six months or less to live. The person you described would certainly qualify based on that information. There are other criteria too such eligibility for Medicare or Medicaid, no further curative treatment, etc.
It is a good time to begin hospice when the patient is ready to accept their prognosis. One very important issue for people who have a terminal diagnosis is fear of death and/or dying. Another is autonomy. For some, denial is a good coping mechanism. For others, accepting hospice means giving up hope. My experience as a hospice social worker was that people want the benefit, they just don’t want it to be called hospice.
When talking to people who qualified to receive the hospice benefit, I would often ask people is they wanted to have a registered nurse come to their home at least once a week...for free. The answer was usually yes. I would then ask if they would like to be able to stay in their home and have other services come to them such as home health aide, pharmaceutical deliveries, social worker, volunteer etc. And again they reply was usually yes. I would also inquire if they wanted assistance with pain management and again yes, yes, yes. When I would say that this benefit was called hospice, they were often still leery. When they learned that they could disenroll at any time to receive curative treatment, they became more interested.
Often people equate hospice with a death sentence. I have seen numerous people discharged from hospice because their prognosis changed. Sometimes their prognosis changed because of the additional support hospice provided. I once discharged a 101 year-old woman who was admitted to hospice with a diagnosis of Adult Failure to Thrive. She had stopped eating and had lost over 10% of her body weight in a few months. She would die if this weight loss continued. After 7 months of hospice service she had regained the weight she had lost plus some and no longer met the hospice criteria.
I tell the above story because it corrects the myth that hospice is a contract, mandating that one must die within 6 months. This knowledge allows people to be admitted to hospice and still maintain hope.
For some people it is just too hard to admit that they have a terminal disease that will eventually kill them. It is important to have the hospice conversation perhaps framed by what you would do in the same situation, instead of what they should do. However remember that it is equally important to meet people where they are. Sometimes the validation that comes with being heard is enough for a person to see other options. Sometimes it is not.
I hope this information was helpful. Please do not hesitate to ask for any clarification.
Yours truly,
Marcy
When? When? When?
Dear Marcy
My 92 year old father is living in a nursing home and is failing. I have asked the staff to help me know how close his time is. Nobody will answer that question. Can you help? He has dementia and high blood pressure. He recently had a urinary tract infection and is now lethargic. His diet has been downgraded to pureed and he eats little. Please help me to know whether his death is near. I am losing sleep because I do not know.
Thank you,
Sleepless
Cincinnati, Ohio
Dear Sleepless in Cincinnati,
One of the most asked questions in hospice is “when”. The question cannot be answered accurately until a person is days or weeks away from death. Medical research has shown that without food and water, a person cannot live much longer than two weeks. Of course there are variables but two weeks is generally considered the longest the body can sustain life without food and water. Worrying about when death will occur, can rob you of the ability to be present with your Dad. According to Lewis Thomas, “ We are, perhaps, uniquely among the earth’s creatures, the worrying animal. We worry away our lives, fearing the future, discontent with the present, unable to take in the idea of dying…”
Often the fear of death limits the opportunities afforded at the end of life. The nearness of mortality touches our very soul and the result is often fear supplanting love. When fear becomes the headline, love takes second place.
The question that your question brings to mind is why is it important to know? If there are long distance family and friends who need to be informed, I recommend The Dragnet approach. Tell them “just the facts”. They can make their own decisions about visiting or not. If you need to know to make plans, buy trip insurance because there is no answer to your question. If you want to take time off from work, do it. Don’t wait because the truth is at this juncture, nobody knows.
The question is how would you proceed differently if you knew he was dying? He is 92 years old with a several medical challenges. There is a good probability that he will not live for another 10 years. Knowing that he has a life limiting disease, explore your own fears and feelings. This will free you to be present with him at each visit. This will free you to enjoy the time you have left together. This will enable you to sleep soundly each night.
Yours truly,
Marcy
To Tell or Not to Tell that is the Question
Dear Marcy,
I do not know what is the best thing to do for my mother. My father died recently and my mother is 86 years old, lives in a nursing home and has dementia. She is confused and can only speak a few words in a day and often they do not make sense. She has short term memory loss and only recognizes myself and my siblings. My sister thinks we should tell her and my brother thinks that it will cause her more suffering. Should she be told and if yes how?
Confused,
Seattle, Washington
Dear Confused,
I am truly sorry for your loss. It sounds as if you all want to do the "right" thing for your mother without regard for your own needs. I have found that the best way to assess her "need to know" is by her actions and words if possible. People with dementia often live in the moment and cannot remember from one moment to the next. If she is told she might suffer the loss over and over again when retold. She may not be able to process the information or express her feelings which may cause distress and frustration for her. My experience has been to tell if the person with dementia repeatedly asks and/or seems to be acting differently than before the loss. When and/if your mother asks, I would tell her that dad is away or dad sends his love or dad is safe or okay. Use your own words to reassure her however if she is constantly asking then it is important to either tell her yourself or have a trusted friend or family member tell her.
Yours truly,
Marcy
Dear Marcy,
My wife is being admitted to hospice this week with a diagnosis of liver cancer. She also has mild dementia and a history of depression. Although she has been told that she has cancer, she is in denial. My wife is not a curious person and did not explore the meaning of her diagnosis and her prognosis . My sense is that she would would not be able to cope with knowing that she has a life limiting illness. Our adult children believe that it is her right to know. What do you think would be the best way to go?
Anxious,
East Liverpool, O
Dear Anxious,
I can understand your concern for your wife's reaction to knowing that she has a life limiting disease. Sometimes the concern is a function of not wanting to witness a patient's response and not wanting to have the conversation. Her denial might be from her Dementia. I would have that evaluated before proceeding with a conversation with her.
In order to receive the hospice benefit the patient (assuming capacity) has to sign a statement choosing hospice care instead of other Medicare-covered benefits to treat her terminal illness. It is the responsibility of the hospice admission team to explain the eligibility criteria to her which is having a prognosis of six months or less to live. If this did not happen, I would speak to her physician or hospice team to coordinate the best way to tell her that she has a limited life span. After she has been told (assuming her dementia is "mild"), it gives her and whole family an opportunity to have closure and to support each other.
Yours truly,
Marcy
Loss of Appetite
Dear Marcy
My husband has been diagnosed with Cancer and recently was placed on hospice. After years of managing the cancer, it is no longer in remission. He used to have a great appetite and now he hardly eats anything. I keep preparing his favorite foods however after a few spoonfuls he is stops eating. I want to keep him strong. I fear that if he does not eat, he will succumb to his disease sooner. This has been a bone of contention between us. He claims that I am always “pushing” food on him and that he will eat when he is hungry. I don’t want to give up on him. It is bad enough that he is dying. I love him and feel useless if I am not able to keep his strength up. What should I do?
Feeling Useless,
Minneapolis, MN
Dear Feeling Useless,
Allowing your husband to listen to his body, is not giving up. Loss of appetite is common for people at end of life. We tend to think of feeding as a way to nurture and as a symbol of love and caring. Cancer tends to block one’s desire to eat. As the disease progresses, it is normal to have less appetite. Food has less appeal and the body has less need for it. It is upsetting to see a loved one eat less, engage less, move less however, it is normal. These are signs that the body is slowing down. Loss of appetite happens in 8 out of 10 patients before death, according to the American Cancer Society. (Remember, it is important to report all changes to your husband’s medical team.)
There are many other ways to nurture and show love to people at end of life that do not involve eating. Being present and providing a space for them to share what is happening to them honestly. This can validate feelings, fears and concerns. We can listen generously to them, sit quietly at the bedside, and perhaps engage them in life review. The most important gift we can give another person is the gift of acceptance for who they are now and what they are experiencing now.
It is also important to talk about your need to feed and give your husband an opportunity to share how he is feeling and what his needs are. I’m certain he deeply appreciates your caring and wishes he could eat.
Yours truly,
Marcy B.
Long Distance Caregiver
Dear Marcy,
My 71 year old sister is dying of colon CA. She lives in New York City and I live in Los Angeles. I would like to get her connect with some services there as she lives alone...well she has cats but they cannot ring callers in or go to the market for her. She says she is not ready for hospice yet but is moving in that direction. I would appreciate any pearls of wisdom you may have to share.
Long Distance Sister,
Los Angeles, CA
Dear Long Distance Sister,
It is important for people living with cancer to have some control in their lives since there is so much that they cannot control You are wise to take your lead from her and support and affirm her decisions.
There are many resources for services for your sister. If she qualifies for hospice she might be surprised to know that it truly is about quality of life not just quantity of life. Hospice does not mean giving up hope and certainly one can revoke from hospice if new treatment is desired.
New York City is fortunate to have The Doula Program to Accompany and Comfort which specializes in providing volunteers who visit weekly and provide support and friendship to patients who have received a life-threatening diagnosis. Their website is www.doulaprogram.org. Another resource could be the National Association of Professional Geriatric Care Managers to find someone to evaluate home care attendants and manage her sister’s care locally. Their website is www.caremanager.org. A gold mine of of good information can be found at www.incareofdad.com. Although it is was started as a one-stop, free resource for those trying to help their parents through a serious illness, the information transfers to all friends and relatives.
I wish you good fortune in your role of long distance caregiver. If I can be of further help, please contact me again.
Yours truly,
Marcy B
How to Choose a Hospice
Dear Marcy,
I live in a city that is served by more than one hospice. How do I choose one? What questions should I ask before making my decision.
In need of help,
Tampa, FL
Dear In Need of Help,
Although hospice is a Federal entitlement benefit which is under the supervision of Medicare, the quality and quantity of services provided vary.
All hospices provide a specially trained team and support staff available to help you and your family. The team will include: doctor, nurse, social worker, home health aide, chaplain, bereavement counselor and volunteers. The frequency of visits by each discipline can vary from hospice to hospice. Some might provide a home health aide for 20 hours a week and others for 10 hours week. It is important to know what to expect from each discipline.
One can get references from people one knows in the community as well as professionals in field (ie doctors, geriatric case managers, social workers, etc.). One's comfort level from talking to hospice admissions people should also be taken into consideration. Also check out their record for quick response to the need for a visit as well a s their respite care criteria and the location of inpatient options. Ask how the hospice will address your individual concerns and how it measures its own quality. Does the hospice have accreditation from JCACO or CHAP? Will there be limits of treatment currently being received by the patient and what does the hospice expect from the family?
The answers to the above questions should start to paint a good picture of the hospices you are considering. You will be an knowledgeable consumer if you interview hospices based on these questions. I hope the above was helpful.
Yours truly,
Marcy
Feeling Powerless
Hi Marcy,
My girlfriends mother is 87 years old, she lives alone in a retirement community that is a very nice place with good staff and every amenity including pool, art room, library etc. She was a swimmer all her life and used to swim 3 days a week up to a few months ago, she had many activities that keep her busy but lately she has stopped them all including not going down to dinner and eating with her friends.
She is a very well educated lady. I tell you this because she now has trouble remembering what she talked about and does not want her friends to see
that her mind is going. ( her words )
She told has told me that she is too old and wished to die which of course makes me sad and powerless. I have done some work with the Metta Institute but am new to working with the aged and the dying.
Thank you for reading my letter
May you be well.
Sad and Powerless
USA
Dear Sad and Powerless,
Although Metta and all of our other training is excellent, the skills don't always transfer when family and/or friends decline or get a terminal diagnosis. It is so hard to witness someone's suffering.
You wrote that you are feeling sad and powerless. Those are common and legitimate feelings. However there are some things that you can do.
1. Rule out medical causes such as over-medication, clinical depression, urinary tract infection, etc
2. Validate her feelings. If she is saying she is old and wishes to die, she might be wanting to be heard.
Telling her that you can understand her feelings now could give her comfort in that no one is trying to talk her out of her own feelings.
3. Make sure that her living will and health care proxy are updated while she has some capacity. It would be a shame if she was not able to direct her own end of life wishes.
4. Help her to find meaning and purpose. Perhaps you or your girlfriend can work with her on a legacy project like creating an ethical will or lead her in life review
through Story Corps which has a great list of questions that may be helpful at http://storycorps.org/great-questions.
I hope that the above are helpful. It sounds like you and your girlfriend are providing love and comfort to her mother. She must be a great lady.
Yours truly,
Marcy
Family Dynamics
Dear Marcy,
My 84 year old husband was recently hospitalized. He was diagnosed with a terminal illness. One of my adult stepdaughter’s wants to be alone with him for three hours because she wants to discuss “family dynamics”. In the past this has meant how he failed her and what a bad parent he was. Is this appropriate at this stage of life to subject him to her criticism? He has become agitated in the past when she starts this conversation. We don’t know what to do. Can you help us? Thank you.
Frenzied,
Minneapolis, MN
Dear Frenzied,
Discussing family dynamics at any time can be challenging however having meaningful conversations are always appropriate. Using this time to blame and rehash old wounds is not appropriate.
If your husband still has capacity I would advise you to ask him if he wants to have the discussion with his daughter. If not then it is up to the family to honor his wishes. Keep in mind that it is important to keep involving your husband in all medical and family decisions. If he is agreeable to privately talk to his daughter, you should allow it and embrace it.
I would encourage you to expand the conversation to a family meeting which could be facilitated by a professional social worker, therapist or neutral friend. The reason to have a professional facilitate the meeting is to make sure that there will be ground rules. These ground rules will help keep people on track while insuring that everyone is treated with respect and has a chance to speak without interruption or criticism. It may provide a forum for your husband to share his concerns and feelings as well..
Your truly,
Marcy
Visiting the Sick
Dear Marcy,
A dear friend of mine was recently admitted to hospice. He has pancreatic cancer. I have never experienced anyone close to me dying. What should I say when I visit him? I am very uncomfortable with visiting the sick and anxious about what to say. Please provide some guidance for me. Thank you
Uncomfortable,
Miami, Florida
Dear Uncomfortable,
It is not unusual to feel uncomfortable about visiting the sick and dying. We Americans are a death denying culture which makes the reality of it all the harder to accept. When someone who is dying, it is important to show up and to talk and listen honestly from the heart. Showing up and listening generously is your greatest gift. Be real, be sincere, non-judgmental and be present. Being present and open to what is happening is healing. It is not so much what you say but the fact that you showed up. Sometimes nothing needs to be said. Sometimes sitting with the person quietly and consciously is healing. There is no need to entertain. The need is to be with what is happening in the moment for your friend. Your friend may feel isolated and alone. Showing up for him and accepting what is happening to him will provide the support he needs..
Yours truly,
Marcy
Dear Marcy,
I have been diagnosed with Brain cancer and only have a few months to live. My family and friends are treating me with kid gloves and are trying to protect me from the ups and downs of their daily life. I am dying and feel isolated. I want to talk to my family and friends in an open way. They are so busy trying to protect me that I cannot have a normal relationship with them....and all I want is to return to a semi-normal life while I can still participate. What can I do?
Isolated,
Austin, Texas
Dear Isolated,
Dying people are often marginalized and isolated. There seems to be a conspiracy of silence around the subject of death. Friends and family are at a loss for words and therefore say nothing. Sometimes they are so busy talking and trying to make things better for you that they do not listen. People are often feel guilty, fearful and anxious about visiting the sick. They are uncomfortable because they do not have the knowledge of what to say or do. It can also trigger facing one’s own mortality.
Be patient with your friends and family and tell them what you need from them. It is hard to see a loved one decline. It is hard to process ones individual grief. Encourage them to visit and prepare them for what they might be observing. You can tell them that you are feeling isolated and need their support. Perhaps reassuring them that you are still the same person as before would help them help you. You might inform them of what they will encounter when they visit such as I am now wheelchair bound and/or sometimes am not able to respond fully to questions however I am still here and would value a visit from you. By letting them know what to expect and what you expect it will help to normalize a very challenging time in everybody's life.
Yours truly,
Marcy
Dear Marcy,
I am dying and feel isolated. I often hear whispering when I am near and sometimes the conversation stops when I enter a room. I am still me and am starting to feel like I am dead already.. My adult children are trying to make decisions for me and I do not want to argue with them at this time. What can I say to my family and friends to help them be with me?
Not Dead Yet,
Marblehead, MA
Dear Not Dead Yet,
Your dilemma is unfortunately a common one. In the misguided belief that not sharing feelings and concerns with a person who is ill or dying is "best" for the patient.
If possible gather them together and tell them what is important to you at this time in your life. Tell them how you feel and your need for dignity and respect at the end of your life. Tell them how you want ot be remembered and most of all let them know that you love them.
Yours truly,
Marcy
Advance Directives
Dear Marcy,
A friend of mine recently died after a short illness. We were all shocked to find out that she had not written down her wishes. Nobody knew what her wishes for medical treatment were and she did not have any family. It was a mess and I do not believe that she received the end of life treatment she wanted. It has made me think about how to make my wishes known. I am a healthy 36 years old who is single. I want to take responsibility and direct my own healthcare. I do not want to be at the mercy of a court appointed guardian.What should I be doing to insure that my wishes for my last days are honored?
Trying to be responsible,
Olean, NY
Dear Responsible,
According to the Associated Press in 2010, only 20-30% of American reported having an advance directive. You will be one of the minority in the USA who have Advance Directives. These directives such as living wills act to inform your health care proxy (medical power of attorney) of your wishes concerning your medical treatments going forward. They go into effect if and when you are unable to make medical decisions for yourself. To access an appropriate form please visit www.caringinfo.org for a state by state link to advance directives. There currently is not one form recognized by all 50 states.
You will need to appoint a Health Care Proxy (HCP) and preferably a primary and a secondary. Please note that if the first HCP is unable to act on your behalf they cannot appoint a replacement therefore it is wise to appoint two.
I hope the above was helpful.
Yours truly,
Marcy
Dear Marcy
I am starting to explore appointing a health care agent. What are the criteria for being a health care agent?
Mr. D.
Sonoma, CA
Dear Mr. D.,
Choose wisely by choosing someone you trust who is willing and able to make potentially difficult decisions about medical treatment for you. He or she can be a friend, family member or professional. It is important to discuss your desires, values, fears, and preferences about medical care in various situations. The more your agent knows about you and your wishes, the better prepared he or she will be to make health care decisions on your behalf.
According to WebMD, a health care agent is a person you choose to make health care decisions for you in the event that you become unable to do so. A health care agent can help make medical decisions on your behalf at the end of life or any other time you are not able to communicate, such as if you are severely injured in an accident. A health care agent also may be called a health care proxy or surrogate or an attorney-in-fact.
State laws vary regarding the specific types of decisions health care agents can make. In general, a health care agent can agree to or refuse treatment and can withdraw treatment on your behalf. Your health care agent can use the information in your living will (also called a treatment directive), statements made by you in the past, and what he or she knows about you personally to make these decisions. For example, your agent can consent to surgery, refuse to have you placed on life-support machines, or request that you be taken off life support.
It is also important to choose a primary and secondary agent. In the event the first agent cannot act in your behalf he or she cannot appoint someone to become your proxy.
Yours truly,
Marcy
Denial
Dear Marcy,
My Uncle George has a terminal illness and is on hospice. His wife is in denial. She keeps talking about trips they will be taking and going to the beach this summer. Every time my uncle starts to talk about the end of his life and what it is like being so limited in his abilities, she shuts him up by saying he is crazy....what do the doctors know, etc. Is there any way for me to intervene? He has no children and we have always been very close. I would like to honor my uncle's wishes to be heard by his wife.
Uncle George's niece ,
Suffern, NY
Dear Uncle George's niece,
Denial can be an excellent coping mechanism. If your aunt has always relied on denial as a way to get through her life then it is what she needs to get through losing her husband. Once a person goes on hospice it is pretty clear that they have a life limiting illness. In order to receive the hospice benefit two doctors must certify that they expect the patient to die within six months, if they continue on the same trajectory of decline. Since hospice provides an interdisciplinary approach to patients and family, I would ask the hospice social worker if she/he could arrange a family meeting with the team. At this meeting with the hospice team, a safe space for everyone to talk about their fears, hopes and feelings will be created. The nurse can answer medical questions that may arise. The Chaplain can address spiritual concerns and the social worker would facilitate the meeting to make sure that everyone present has the time and respect to tell their story. The social worker would prepare an agenda that might include topics such as how we got here, what does the patient need to have heard, how is the caregivers coping, financial, physical, spiritual and emotional concerns, etc. As well as setting the ground rules prior to the meeting. These would include no cross talking which allows each person to talk without being interrupted or challenged as well as confidentiality. Participants will be reminded to talk from the "I" not to point and say "you". A family meeting will give everyone a chance to be heard in a safe and nurturing environment.
Yours truly,
Marcy
When When When
Dear Marcy
My 92 year old father is living in a nursing home and is failing. I have asked the staff to help me know how close his time is. Nobody will answer that question. Can you help? He has dementia and high blood pressure. He recently had a urinary tract infection and is now lethargic. His diet has been downgraded to pureed and he eats little. Please help me to know whether his death is near. I am losing sleep because I do not know.
Thank you,
Sleepless
Cincinnati, OH
Dear Sleepless in Cincinnati,
One of the most asked questions in hospice is “when”. The question cannot be answered accurately until a person is days or weeks away from death. Medical research has shown that without food and water, a person cannot live much longer than two weeks. Of course there are variables but two weeks is generally considered the longest the body can sustain life without food and water.
Worrying about when a person will die, can rob your ability to be present with your Dad. According to Lewis Thomas, “ We are, perhaps, uniquely among the earth’s creatures, the worrying animal. We worry away our lives, fearing the future, discontent with the present, unable to take in the idea of dying…”
Often the fear of death limits the opportunities afforded at the end of life. The nearness of mortality touches our very soul and the result is often fear supplanting love. When fear becomes the headline, love has to take a secondary place.
The question that your question brings to mind is why is it important to know? If there are long distance family and friends who need to be informed, I recommend The Dragnet approach. Tell them “just the facts”. They can make their own decisions about visiting or not. If you need to know to make plans, buy trip insurance because there is no answer to your question. If you want to take time off from work, do it. Don’t wait because the truth is at this juncture, nobody knows.
The question is how would you proceed differently if you knew he was dying? He is 92 years old with a several medical challenges. There is a good probability that he will not live for another 10 years. Knowing that he has a life limiting disease, explore your own fears and feelings. This will free you to be present with him at each visit. This will free you to enjoy the time you have left together. This will enable you to sleep soundly each night.
Yours truly,
Marcy
Dear Marcy
My 92 year old father is living in a nursing home and is failing. I have asked the staff to help me know how close his time is. Nobody will answer that question. Can you help? He has dementia and high blood pressure. He recently had a urinary tract infection and is now lethargic. His diet has been downgraded to pureed and he eats little. Please help me to know whether his death is near. I am losing sleep because I do not know.
Thank you,
Sleepless
Cincinnati, OH
Dear Sleepless in Cincinnati,
One of the most asked questions in hospice is “when”. The question cannot be answered accurately until a person is days or weeks away from death. Medical research has shown that without food and water, a person cannot live much longer than two weeks. Of course there are variables but two weeks is generally considered the longest the body can sustain life without food and water.
Worrying about when a person will die, can rob your ability to be present with your Dad. According to Lewis Thomas, “ We are, perhaps, uniquely among the earth’s creatures, the worrying animal. We worry away our lives, fearing the future, discontent with the present, unable to take in the idea of dying…”
Often the fear of death limits the opportunities afforded at the end of life. The nearness of mortality touches our very soul and the result is often fear supplanting love. When fear becomes the headline, love has to take a secondary place.
The question that your question brings to mind is why is it important to know? If there are long distance family and friends who need to be informed, I recommend The Dragnet approach. Tell them “just the facts”. They can make their own decisions about visiting or not. If you need to know to make plans, buy trip insurance because there is no answer to your question. If you want to take time off from work, do it. Don’t wait because the truth is at this juncture, nobody knows.
The question is how would you proceed differently if you knew he was dying? He is 92 years old with a several medical challenges. There is a good probability that he will not live for another 10 years. Knowing that he has a life limiting disease, explore your own fears and feelings. This will free you to be present with him at each visit. This will free you to enjoy the time you have left together. This will enable you to sleep soundly each night.
Yours truly,
Marcy
