What Do I Do When Someone is Grieving?

A doctor stopped me in the hall the other day and asked what he could do to comfort his brother whose son had just died. He told me that the son was only 25 and had died in a car accident. The doctor said that when he talked to his brother, all his brother had done was to scream and yell at him.  He didn’t understand why his brother reacted that way when all he was trying to do was to help.

As I sat down, I could see this doctor’s grief and pain. He was suffering for both the death of his nephew and because he couldn’t find a way to be supportive of his brother. He didn’t understand that grief, especially the early stages of grief can show up in many different ways. His brother wasn’t angry at him, he was angry that his son was dead. But he was taking it out on those around him. That is normal.

Everyone is different in their grief. Some people cry. Others get silent. Some can’t eat while others can’t get out of bed. Any emotion is okay when someone is in grief. And the grief will change as time goes on. When my Dad died, at first I was very quiet and wanted to be left alone. Then I couldn’t stop crying and needed people’s support. And now, years later, it is still an ache deep in my heart.

So how can we help?

1. There are no magic words to make the person feel better. Just say, “I am sorry for your loss.” Now I know you want to make them feel better, but trying to find the perfect words won’t help, but listening does. Listening is very healing.

2. So your next step is to listen, truly listen. If they start talking about their grief, don’t jump in with your own story about the loss you suffered in the past. It is not about you. It is about being present with them and their suffering. I admit that listening is hard. But try to sit still, be quiet and give them this gift.

3. The other thing you can do is to “normalize” their grief. What does this mean? The grieving person would like to be reassured that what they are feeling is normal and to feel less alone with their sorrow. So if they say, “I am so angry at _______.” You can say, “It is normal to be angry. That is a part of the grief process.” Any emotion is normal. That is grief.

4. Don’t be surprised if they don’t want to talk about their loss. Sometimes people need a break from their grief and would just like to have a normal conversation with you. In some cultures and families, grief is a private matter so please respect this and continue to be a good friend.

5. Lastly, if you are a healthcare professional, is it okay to cry with your patient? Of course it is. Sharing a few tears with someone else is a sign of compassion and understanding. But do not cry so hard that the patient then has to comfort you.

Have a kind and respectful day.

Advance Directives Part 3 - Now that you have filled it out, what should you do next?

Now that you have filled it out, what should you do next?

1. Well, the first thing you have to do is sit down with your first choice and your alternate decision makers and discuss what you would want if you were injured, disabled or dying. Remember that this form goes into affect when you are too mentally disabled, unconscious or sedated to speak for yourself.

2. Then, you have to give all of your decision makers a copy of your advance directive. You also need to give copies to all of your doctors and your local hospital. You should keep a copy at home either by your bedside, taped to the inside of your medicine cabinet or on your refrigerator. You can also keep one in your car or in your purse. People won’t know what you want if they can’t find your instructions. Doctors get frustrated when the family says, “The patient has an advance directive, but we don’t know where it is.”

3. The next time you go to your doctor, bring him a copy and discuss what you have written with him. Ask him if he would be willing to respect your choices. This is where you can really get into trouble. Some doctors won’t follow what people have written in their advance directives, so you better know right now if he is one of those doctors. Also, some doctors are too afraid to talk about death. If you don’t think your doctor would not respect your wishes or if they are too uncomfortable talking about dying, then find yourself another doctor. I am serious about this. Doctors go against people’s instructions and prolong the suffering and dying of patients in every hospital. If you find yourself in this situation, with the doctor refusing to follow the advance directive, then the bioethics committee at your hospital should be able to help you. If you are the loved one and you are unwilling to follow what is written in the advance directive, then you shouldn’t be the decision maker. Have the doctors use one of the alternates.

How to get an advance directive and other resources.

1. The easiest way to get a free advance directive is to go to the front desk of any hospital. Just tell them you need one or more for your family and they should give them to you free.

2. You can go online to caringinfo.org for a free, state specific form. These are also free.

3. If you need one in a particular language, then do a google search with your state and language and see what comes up. Only a few languages are available, I am sorry to say.

4. Your doctor’s office should have one for you, but unfortunately, many doctors don’t keep them in their office.

5. You can also order one from Five Wishes. This is a very good document for explaining what you would want in certain situations. The document costs $5 each and can be ordered in bulk (25 copies or more are $1 each) at 888-5-WISHES or www.agingwithdignity.org. These forms are valid in 40 states including: Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, The District of Columbia, Florida, Georgia, Hawaii, Idaho, Illinois, Iowa, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska,
New Jersey, New Mexico, New York, North Carolina, North Dakota, Oklahoma Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Vermont, Virginia, Washington, West Virginia, Wisconsin and Wyoming.

Quick Version for How To Fill Out Your Form:

Whom should you pick?
1. Pick someone who will understand what the doctor is saying.
2. Pick someone who knows you well and has listened to you tell them what you want.
3. Pick someone who won’t fall apart in a crisis.
4. Pick someone who will do what you have asked, even if it difficult to do.
5. Write down who you don’t want to be your decision maker.
6. You can pick two or three people to work together as your decision makers.
7. Your spouse may not be your best choice and you may want to choose someone else.

What would you want?
1. This form goes into effect when your brain isn’t working anymore, not just when you are dying.
2. Don’t be too specific about the particular treatments you want or don’t want because you don’t know what the medical situation will be when you need this form.
3. Write out a “Meaningful Recovery Statement” describing what kind of life you would want, if you were disabled and couldn’t think anymore.
4. Tell the doctors what they should do if you were going to live in a terrible condition as well as if you were dying.
5. Write down anything else you want them to know about where or how you want to die, organ donation preferences or autopsy instructions.

Have a kind and respectful day.

Advance Directives Part 2 - What would you want if you were unable to speak for yourself?

Next let’s look at how to tell the doctor what you would want, if you were unable to speak for yourself.

What would you want?

1. The first thing is to remember that this form goes into affect when you are too mentally disabled, unconscious or sedated to speak for yourself. This form will be used when you are injured, sick and/or when you are dying. Too many people, including doctors, think of this form as only a dying form. For some people, this form will be used for years when they have become mentally ill or disabled.

2. The next thing to decide is what you would want in certain medical situations. Should you be specific or vague about the specific medical treatments you would want? I would encourage you to be vague. You won’t know the exact medical situation you might find yourself in and you may have guessed wrong when you wrote down don’t do this or don’t do that. Here is an example: A patient might write on his or her advance directive that they never want to be put on a ventilator. How will this statement be interpreted by your doctors? The doctor will not put you on the ventilator because if he does, then it is considered assault and battery to give someone medical treatments against his will. This recently happened to an elderly gentleman. The gentleman wrote that he didn’t want to be hooked up to a ventilator, but what he meant was, he didn’t want to live on a ventilator. This became a problem when he needed to be hooked up to a ventilator for 4 days in order to recover from an infection. He didn’t need it forever, just for a few short days. But because he was too specific, the doctor couldn’t save him. So be careful when you request certain medical choices. Make sure that what you have written would work in all situations.

3. So, now that I just scared you, you are probably worried about what to write in this section. I have a solution. It is called a “Meaningful Recovery Statement.” You need to explain to the doctor, “What kind of life would you want to live if your mind no longer worked well or if it didn’t work at all?” Now for some people, any condition is okay as it is God’s will to determine how we live and when we die. But for others, you can’t think of anything worse than living in a nursing home, wearing diapers, having other people feed you and not being able to recognize your loved ones. But how will your doctors know what you want if you don’t tell them? Doctors know how to practice medicine. But what they don’t know is what would make for a “meaningful recovery” for you. So you have to tell them.

Here is my “Meaningful Recovery Statement”:
“I value a full life more than a long life. If I have lost the ability to interact with others and have no reasonable chance of regaining this ability or if my suffering is intense and irreversible, even though I have no terminal illness, I do not want to have my life prolonged. I would not then ask to be subjected to surgery or to resuscitation procedures, to intensive care services, or to other life-prolonging measures, including the administration of antibiotics, blood products or artificial nutrition and hydration. I also believe that the financial and emotional burden on my family should be considered in making these types of decisions.”

Because I have written this in my advance directive, the doctors will know what is important to me. Of course this doesn’t have to be your statement. Write one that is meaningful to you and attach it to or write it on your advance directive.

One more thing, please address the issue of terminal versus non-terminal situations. If you are terminal, then it is important your doctors know where and how you would want to die. If you are only severely disabled, but not going to die soon, then you need to let them know what kind of life would be tolerable for you. The best way to be protected is to write it down.

We have just gone over the main sections. Of course you can write down anything else you want the doctor to know about you. You might want to tell them where or how you would want to die, if you would like to donate your organs or if you are for or against an autopsy. This is your form, so write down whatever works for you.

Have a kind and respectful day.

Advance Directives Part 1 – Choosing your decision maker

Most doctors just hand the patient this form and say fill it out. But they don’t help you fill it out or explain what the decisions mean. I am going to help you think through the process of filling out your Advance Directive.

There are two main decisions you need to make when you are filling out your Advance Directive. Who you want to make your decisions for you and what you would want. After I help you with these two questions, I will then tell you what to do with your advance directive after you have filled it out. At the end, I have included instructions on how to find a form that would work in your state.

Let’s first talk about who you would want to make decisions for you. In your state, your form might ask you to list your agent, proxy or surrogate decision maker. (These words all mean the same thing, but each state its own legal term.)

Who should you pick?

1. You should pick someone who is medically literate. What does this mean? The person should be able to understand what the doctor is saying, be able to figure out the medical words and be able to understand the medical choices being offered. If the person you thought you were going to pick would be confused by what the doctor would say, then pick someone else.

2. You should pick someone that knows you very well, would know what you would want in a medical crisis and would tell the doctor what you have told them in the past. The person you have chosen will be asked to listen to the medical information and then use your values to make the medical decisions. The person is not supposed to use his or her own values, but to speak as if they were you. If the person you thought you would pick wouldn’t respect your choices or has very different beliefs from yours, then pick someone else. You want someone who will speak as if he or she is speaking with your voice, not his or her own agenda.

3. You should pick someone that won’t fall apart in a crisis. It doesn’t do you any good if the person is hysterical, can’t function or can’t stand to visit you in the hospital. You need to pick someone brave enough and who will be by your side no matter how difficult things get. If the person you thought you would pick doesn’t handle his or her own life very well, then don’t have him or her be in charge of yours.

4. You should pick someone that will do right by you even if it is the most difficult thing they ever had to do. Sometimes doing the right thing is allowing the person you love to have a peaceful death. And your decision maker needs to be able to live with the difficult decisions he or she has to make. In reality, he or she is making the decisions based on what you would want, not what he or she would want. But that doesn’t make it any easier. You have to be able to talk to this person ahead of time about what you would want in different kinds of situations. So, if the person you thought you would pick is too afraid to talk about death and dying, then he or she isn’t the right person for this job. And if he or she would refuse to follow through with what you have requested, then pick someone else.

5. You can write down whom you don’t want to be your decision maker. Depending on what state you live in, the rules vary regarding who is in charge of you when you are unconscious or incapacitated. You need to protect yourself.

6. Doctors won’t tell you this but you can pick two or three people to share in your medical decision making. But be careful that you pick people who can work together, will support each other and who you know won’t make things worse for the healthcare team. I had one lady tell me that she picked her two sons to make her decisions and that these two men had never agreed on anything. She is setting herself up for a nightmare as good decisions won’t get made and the doctor will hate having to deal with her sons. You don’t want your doctor to hate your decision maker. Please pick carefully.

7. Some people don’t pick their spouse because they know that it would be too much for their loved one to go through and that their spouse couldn’t make these most difficult decisions. If you do pick your spouse, then you need to be extremely careful about picking the alternate decision makers. The alternates will make your decisions if you and your spouse are injured in the same accident. The alternate should be just as qualified as your first choice.

I am available to speak at your organization or hospital.

Have a kind and respectful day.

Choosing a Nursing Home - A checklist

Visit Nursing Home Compare at www.medicare.gov/NHCompare for more information. This list can be found at http://www.medicare.gov/LongTermCare/Static/StepsOverview.asp

Name of Nursing Home:
Date of Visit:

Basic Information - Answer Yes or No

The nursing home is Medicare-certified.
The nursing home is Medicaid-certified.
The nursing home has the level of care you need (e.g. skilled, custodial), and a bed is available.
The nursing home has special services if needed in a separate unit (e.g. dementia, ventilator, or
rehabilitation), and a bed is available.
The nursing home is located close enough for friends and family to visit.

Resident Appearance

Residents are clean, appropriately dressed for the season or time of day, and well-groomed.

Nursing Home Living Spaces

The nursing home is free from overwhelming unpleasant odors.
The nursing home appears clean and well-kept.
The temperature in the nursing home is comfortable for residents.
The nursing home has good lighting.
Noise levels in the dining room and other common areas are comfortable.
Smoking isn’t allowed or may be restricted to certain areas of the nursing home.
Furnishings are sturdy, yet comfortable and attractive.

Staff

The relationship between the staff and the residents appears to be warm, polite,
and respectful.
All staff wear name tags.
Staff knock on the door before entering a resident’s room and refer to residents by name.
The nursing home offers a training and continuing education program for all staff.
The nursing home does background checks on all staff.
The guide on your tour knows the residents by name and is recognized by them.
There are licensed nursing staff 24 hours a day, including a Registered Nurse (RN) present at
least 8 hours per day, 7 days a week.
The same team of nurses and Certified Nursing Assistants (CNAs) work with the same resident
4 to 5 days per week.
CNAs work with a reasonable number of residents.
CNAs are involved in care planning meetings.
There is a full-time social worker on staff.
There is a licensed doctor on staff who is there daily and can be reached at all times.
The nursing home’s management team (including the Director of Nursing and the
Administrator) has worked together for at least 1 year.

Residents’ Rooms

Residents may have personal belongings and/or furniture in their rooms.
Each resident has storage space (closet and drawers) in his or her room.
Each resident has a window in his or her bedroom.
Residents have access to a personal telephone and television.
Residents have a choice of roommates.
Water pitchers can be reached by residents.
There are policies and procedures to protect residents’ possessions.
Hallway, Stairs, Lounges, and Bathrooms and Exits are clearly marked.
There are quiet areas where residents can visit with friends and family.
The nursing home has smoke detectors and sprinklers.
All common areas, resident rooms, and doorways are designed for wheelchair use.
There are handrails in the hallways and grab bars in the bathrooms.

Menus and Food

Residents have a choice of food items at each meal. (Ask if your favorite foods are served.)
Nutritious snacks are available upon request.
Staff help residents eat and drink at mealtimes if help is needed.

Activities

Residents, including those who are unable to leave their rooms, may choose to take part in a
variety of activities.
The nursing home has outdoor areas for resident use and staff help residents go outside.
The nursing home has an active volunteer program.

Safety and Care

The nursing home has an emergency evacuation plan and holds regular fire drills (bed-bound
residents included).
Residents get preventive care, like a yearly flu shot, to help keep them healthy.
Residents may still see their personal doctors.
The nursing home has an arrangement with a nearby hospital for emergencies.
Care plan meetings are held with residents and family members at times that are convenient
whenever possible.
The nursing home has corrected all deficiencies (failure to meet one or more Federal or state
requirements) on its last state inspection report.

This is just the beginning. Make sure you plan on visiting at different times of the day and night to make sure that this is the place you would want your loved one to live. And after the person moves in, make sure you keep visiting at random times so the staff knows you are watching out for your loved one.

Have a kind and respectful day.

When your loved one said to do everything, but everything isn’t possible

Dear Viki,

My father said he wanted everything done but I can’t bear to watch his suffering. It seems like he keeps getting these terrible treatment, but nothing works. The doctor keeps asking me if I think it is time to put him on hospice but I promised my dad that I would make sure the doctor didn’t give up on him. My dad is the type of person who would never give in or give up. I feel like I am supposed to do what he says, but isn’t there ever a time when I should just say, “Enough”?

I am so sorry you are in this difficult position. It must be so difficult trying to balance doing the right thing for your dad with trying to respect his wishes. The first thing I would suggest is to make sure you get better pain management for your dad. He shouldn’t be suffering while he fights his disease. Ask for a referral to a palliative care doctor. This type of doctor can help you with the healing of your dad’s suffering and get the symptoms under control.

Secondly, what you are experiencing is moral distress. This is when you are doing the right thing but it feels so wrong. I would be suffering like you if I was in your situation. For some people, there is tremendous value in the fight to the end. Not giving up is more important than the hardships that are faced along the way. But this can put a tremendous burden on the person having to make the decisions and to witness the results of these choices. One of the most difficult situations is when the person asks us to advocate for things we don’t agree with. The thing you have to realize is that this is your dad’s life and health. This is how autonomy works. People have the right to make bad decisions. And you have to be brave enough to do right by your dad.

The answer to your question:

Here are your obligations. Since your dad told you that he wanted to fight to the end, then that is what you should try to do. But that doesn’t mean you have to keep choosing to do things that don’t work. If the treatments are only causing suffering and are not helping your dad, then you are not obligated to continue with that plan. You are supposed to fight for the medical options that will actually benefit him. Talk to the doctor and tell him it is time for a new plan for your father. Anytime a plan stops working, we have to face it and make a new plan. If there is nothing new that the doctor can offer, then that is when you can say enough. And now your work begins as you advocate to get him the best end of life care that you can. Change the “do everything” that you have been focused on during the fighting process into a “do everything” to fight for a pain-free and peaceful death. Don’t think of this as giving up, think of this as fighting for a new goal.

Why wouldn’t my doctor or the nurse listen to me?

Dear Viki,

I was having a terrible allergic reaction to a new medicine and the nurse at the doctor’s office wouldn’t take me seriously. My skin was turning red and was burning and my lips were stinging and swelling. It took me days before anybody took me seriously. I called over and over again for three days. And then when I finally talked to the doctor, she said I should keep taking the medicine because it was important for my heart. Eventually I got an appointment with another doctor and when I stopped the new medicine, all the symptoms went away. What could I have done to get their attention?

I am so sorry this happened to you. First thing, if you are having a terrible reaction to a medication, go to the emergency room. Some allergic reactions can become fatal. Regarding your doctor and the nurse, you have a problem. This is an office that isn’t taking your complaints seriously. Either they didn’t believe you or they didn’t realize it was serious. Either way you are in trouble.

Be thankful you have found out now that this doctor isn’t a good fit for you. This doesn’t mean this is a bad doctor, just not the right doctor for you. For some reason, they wouldn’t believe you and you can’t take the chance that this might happen in the future. This could be dangerous to your health.

Even it wasn’t the doctor who made the mistake, the doctor has a nurse working for her that doesn’t respect what the patient says or doesn’t pass on the messages appropriately. You can not take that risk. What if it is truly life threatening the next time? I highly recommend that you take this as a warning and find a different office. Sometimes in life we get the gift of knowledge. Use this experience to protect yourself and get an doctor’s office that will listen to you.

Have a kind and respectful day.

Sign up for the free service, “The Kindness Reminder” - Remember to connect with your loved ones.

The “Kindness Reminder” is a brief weekly email to remind you to connect with your aging parent or other loved ones. The reminder is full of touching and fun ways to reach out and connect.

When a colleague asked me to create these reminders for him, I realized I have been doing this type of thing all my life. I used to call my brothers and remind them to call our dad. It wasn’t that they didn’t care; it was just that like all of us, we get caught up in our own lives.

People think I am amazing because I remember to call on birthdays or to call in once a week to check on my elders. I am not amazing, I am organized. I pre-book recurring appointments in my PDA so I it sends me reminders to call, write or show I care. Otherwise, it would slip my mind and weeks would go by before I would make the effort.

These reminders will give you a number of ways to show your concern and your love. I will also give you ideas on how to thank those who are taking care of your loved one when you are either far away or unable to be there. The more you show appreciation for those who take care of your loved one, the better care they will get.

Just sign up in the box in the upper right section of my blog at KindEthics.com. Thanks for helping me make the world a kinder place. Please let others know about this free service.

Have a kind and respectful day.

DNR (do not resuscitate or no CPR) does not mean do not treat or do not care. A warning for all of us.

Dear Viki,

I noticed that after my dad became a DNR in the hospital, the nurses didn’t come into the room as often anymore and the doctor didn’t visit the way he used to. Just because my dad didn’t want to have CPR didn’t mean that he still didn’t want to fight his cancer. But it seemed like everybody gave up on him. Did the DNR (do not resuscitate) decision really mean, Do Not Care?

I realize that not only are patients confused about what DNR means (do not do CPR), but nurses and physicians are also confused. I know that’s not what you want to hear, but it’s true. Somehow DNR has become a decision about treatment choices instead of just CPR. What DNR should mean is only one thing, do not do cardiopulmonary resuscitation.

Research has found that if a patient is a DNR, then healthcare professionals may believe that the patient doesn’t want any other types of aggressive treatment. But this isn’t true. A patient may want chemotherapy, surgery, radiation therapy or other kinds of aggressive treatments, and still not want to receive CPR. A DNR doesn’t tell you anything about what other treatments the patient might or might not want to receive.

I’m not telling you this to scare you out of being a DNR. Not at all. I am just reminding all of us that one part of the end-of-life decision making process does not dictate everything else we might want. So yes, you can be a DNR and still have appropriate aggressive medical treatments. Or you can be a DNR and choose only to have hospice care. Or you can be on hospice and not be a DNR. Or you can choose some of the medical treatments being offered and refuse others. These are all separate decisions. You get to choose from all of the appropriate medical options available. Choose some, choose all or choose none. It is up to you. The only thing you can’t choose is a treatment that is not a valid medical option. You cannot make the doctor gave you ineffective or non-beneficial treatments. You are only allowed to choose from the list of medically appropriate treatments for your condition.

Lastly, as a reminder to all the healthcare professionals. A DNR never represents a do not care order. We should still be going into their hospital room as often as we would for someone without a DNR. We should always treat the patient with respect and dignity and provide comfort care to manage their suffering.

Have a kind and respectful day.

A Timeline Tool For When You Are In The Emergency Room

Dear Viki,

I got a call from someone as her grandmother was being taken to the hospital. Her grandmother’s doctor wouldn’t come to the hospital even though her mom had chest pain and very high blood pressure. After asking more questions, I explained to her that the probable reason the doctor wouldn’t come to the hospital was that he didn’t want to interrupt his weekend plans. I know it is cruel to say, but it is probably true. I know there are lots of great doctors out there but you have to realize that I only get called when there is a problem. (Now before the doctors reading this get angry, the person had a blood pressure of 240 over 110, chest pain, vomiting and the doctor said to not take her to the hospital. And the doctor was on call that weekend.) I also know that doctors are real people and they hate being on call on a holiday weekend. I don’t blame them. How would you like to have your day interrupted and have to leave in the middle of your most precious family events? This is one of the sacrifices they make for us.

So back to the story:

I talked the person through what to say to the ER doctors to make sure they got what they needed. I explained how to get the services she needs by using respect and good communication. You have to make it easy for the doctor because time is limited. You need to organize what you are going to say, be clear and give both the current facts as well as the past medical history. Here is where you have to be careful. You have to focus on telling them what is relevant to this situation. My dad would go to the doctor for a pain in his leg and then spend his time talking about his dysentery from World War 2. It was not the same body part and it was 60 years ago. Yes, you should give information about the person’s medical past but try to make sure it is relevant to the situation. But you may not know what is relevant so instead you can create a timeline for the doctor. (Keep a copy with you and with the patient for emergencies.)

One way you can do this is to construct a written timeline of the patient’s health. Here is an example:

1945: dysentery during the war
1988: cataracts diagnosed
1998: double bypass surgery
1999: cataract surgery
2001: prostate surgery for enlarged prostate
2002: allergic reaction to sulfa drugs
Include a list of medications and allergies

Now the doctor can see all the important events and he can get to the information quickly and effectively. Then you can spend more time talking about the present situation. The more you help the doctor whether it is in the office or in the hospital, the more they can help you.

Have a kind and respectful day. Viki Kind at KindEthics.com

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