How do I get my loved one on Hospice?

Viki,

How do I get my husband into hospice? He has cancer which has spread everywhere and his pain is not being managed. I have heard about hospice but I don’t know who to call. What can I do?

I am so glad you asked. To get a patient on hospice, a doctor has to make the referral to the local medical hospice. You have to ask your husband’s doctor, and it could be any of his doctors, to call hospice and set it up. Some doctors are not willing to put their patient on hospice because they don’t want to give up trying to save your loved one. So if your husband’s doctor won’t put him on hospice, ask another doctor you know. An ER doctor can also put someone on hospice.

After the doctor calls hospice, the hospice representative will call you later that day or the next morning. A social worker and a nurse will both be coming out to see your husband within 24 hours. They will evaluate what needs your husband has and what your family may need. If your husband qualifies for hospice, you will start receiving visits from other hospice staff, deliveries of medical supplies such as hospital beds, oxygen or bedside commodes. You will also be receiving medications to have available to take care of his pain and other symptoms. And the good news is that none of this will cost you anything.

The nurse will teach you about the new medicines and there is a 24 hour hotline you can call if his symptoms change and you need help. Every patient is different. What your husband will need may be very different that what my Dad needed. The good thing about hospice is that as patient’s health needs change, they can adapt the plan and continue to provide comfort for your loved one.

It may be overwhelming for the first few days as so many caregivers will be coming and going as they make sure your husband is well taken care of. Unfortunately, you do lose some privacy which takes some time to get used to. Don’t worry though, after a while you will get to know the hospice team and they will become your trusted friends. Most people find hospice to be a huge comfort to them as they can know that their loved one won’t be suffering.

Got a question? Ask Viki.

Unethical behavior on Grey’s Anatomy

This won’t be the first or last time I will need to comment on unethical behavior on medical shows.

I am never surprised to see unethical medical behavior on television but I worry that the general public will think that this is how medicine is done.

Grey’s Anatomy had an episode last week in which one doctor went to speak to a patient’s loved one about donating their organs to a young boy who was dying. That would never happen in a non-TV hospital because doctors are not allowed to speak to the family about organ donation.

The only person who should be talking to the family is the representative from the local organ procurement agency. This protects doctors from having a conflict of interest by having to be both the person who is trying to save the patient and the person trying to take the organs after the death.

Another unethical thing that happened was what occurred after the doctor asked the wife for her husband’s organs and the wife said “no”.

Since other organs weren’t available for the dying boy, the doctor went back and put more pressure on the wife. This wouldn’t happen either. In medicine, we are supposed to respect people’s decisions, especially when they say no. Organ donation can not be a coercive process. You can ask, but you can’t push or force people to decide to donate their organs.

To make sure your family isn’t put in this situation without knowing your wishes, make sure you tell people what you would want in that situation. If you want to donate your organs after your death, then register your wishes with your local department of motor vehicles either online or in person. If you don’t want to donate, then you should write that down in your advance healthcare directive.

I believe in organ donation because organ donation saves lives. Maybe someday it will save yours.

Got a question? Ask Viki.

Why Did the Doctor Run Away?

Dear Viki,

“The doctor stopped coming into my grandpa’s hospital room and never came back to check on him. Luckily the nurse was there and helped our family as we didn’t know what to do. Viki, why did my grandpa’s doctor run away when my grandpa was dying?”

Maybe the doctor didn’t really “run”, but to the family, it felt like the doctor ran away and became invisible as the end approached. I don’t think doctors mean to do this, but unfortunately, doctors can be uncomfortable around death.

I know, you’re saying, “How can that be?” Well, it is easy. Those who are drawn to medicine and want to become a doctor are those who want to heal and to save. Nobody becomes a doctor to help people die. But unfortunately patients do die and doctors would rather not be a part of it. Unless they get specialized training, their discomfort with death doesn’t go away. Luckily, the young doctors coming out of medical school are getting better training regarding taking care of the dying.

Thank goodness for the nurses who take such good care of our loved ones as they die. Sometimes the best we can do for our loved ones is to have a good nurse, a good chaplain and a good social worker to make the experience a little better. Over the next few months, I will be discussing the concept of a “good death” in greater detail.

Feel free to contact me with your death and dying questions.

The Unbefriended Senior

What is an “Unbefriended Senior? The “unbefriended” is a word used to describe someone who doesn’t have any friends or loved ones in their lives that the doctor can talk to when the patient is sick or injured. This term could also apply to someone younger without any family or friends.

Let me tell you about what just happened. An 80 year old woman collapsed at the market and was brought to the emergency room. She has had a massive stroke and may not live. The social worker looks through the patient’s wallet to find her insurance card and any information about who to contact in case of an emergency. Only the insurance card and an address are found. The social worker begins to make calls, goes to the patient’s house and tries to find anyone who might know this person. But nobody is found.

So what can the doctors do? If the patient gets better, then the patient will be able to speak for herself but if she doesn’t wake back up then the doctors will have to apply the “Best Interest Standard.” What is this? The Best Interest Standard is used when the healthcare team doesn’t know what the person would want and when nobody is available to talk to.

The healthcare team and possibly the bioethics committee will meet to evaluate what medical options are available for this patient. This way it is not just one person making the decision but a moral community. Next, there will be a discussion about the benefits and burdens of each of the options. Then they will do the best they can to decide what should be done. They may have to make the difficult decisions about dying and death for this person.

The other option for the healthcare team is to have the court assign a public or private conservator or guardian for them. This court appointed person will make their medical and/or financial decisions for the patient. But of course, they don’t know anything about this person either so the choice they will make might be wrong.

My question for you is, “Would you want a stranger to be making life and death decisions for you?”

If the answer is no, then please tell your doctor who they should talk to if you are injured, write it down in your wallet and fill out your Advance Directive. I don’t want you to ever be the unbefriended patient.

Got a question? Ask Viki.

Why Won’t the Patient/Family Sign the DNR?

A couple of things may be going wrong. The first thing that happens is that the patient doesn’t understand the success rate of CPR.

On the television show “ER”, the patient not only survives CPR about 80% of the time but they also wake up with no negative consequences from the resuscitative efforts. We need to educate them that CPR works about 15-20% of the time on healthy people and less than 1% of the time for those with multi-system organ failure or metastatic cancer. We need to tell them that they may wake up in a worse condition than before and we need to tell them when it may only prolong their suffering and dying.

The second thing that goes wrong is that we limit our discussion to CPR. The CPR question should be one of many significant questions we ask during a meaningful end of life conversation. We need to ask them about how and where they would like to die.

Ask them, “How can I respect you and help you as you die?” We need to tell them that they have the choice of having a stranger straddling them doing compressions while their family waits outside the door or a peaceful death surrounded by their loved ones? I have never met a doctor who said they would choose the lonely CPR death, so why would you think your patients would want this?

The other thing most people want is to die at home but 53% die in hospitals and 24% in nursing homes. Please send people back home with hospice support.

One other thing you might try is you may want to begin using the term “AND” or Allow Natural Death when you talk about DNR. It is much easier to talk about what they would be allowing versus what you would be taking away from them. Just changing this language changes the discussion. This language also helps when you are talking to people from other cultures. It is difficult for families to choose to “give up” when what you are really offering is a good death.

No matter what, patients and families need us to talk about these scary and difficult subjects. We have to have courage to walk with them as they journey toward death.

Got a question? Ask Viki.

How Do You Want to Die?

Your doctor comes into the exam room or your hospital room and asks you, “Do you want us to do CPR?” (CPR meaning cardiopulmonary resuscitation or bringing you back to life after you have died or as some doctors brutally put it, “pounding on your chest.”) What would your answer be?

I’ve asked many groups of doctors, “How many of you would like to die by CPR?” And no doctor ever, ever raises their hand. What is it that they know that they’re not telling us? They know that the chance of CPR working is minimal, sometimes even 0%. But they don’t tell you this. They don’t tell you that it’s not like on the television show ER. On ER, CPR works about 80% of the time. In real life, if you’re healthy, CPR works about 15 to 20% of the time. And if you are close to death, CPR works less than 1% of the time and will prolong your suffering.

Now just to be clear, CPR does work well if you’re a fairly healthy person having a sudden heart attack. To illustrate this point, one hospital told me that it would be best if CPR was only done on visitors who dropped dead from a heart attack. Of course that was said as a joke, but the people in the hospital understood that there was some truth in it.

The other thing they don’t tell you is that it can be brutal. You may be brought back to life but in a worse condition than before both mentally and physically. Or that you and your family won’t have the opportunity for a peaceful and profound death experience. When you picture the last minutes of your life, do you see strangers straddling you on a bed, thumping on your chest, all alone, while your family waits outside the door? Or do you see a time with family and friends gathered around the bedside, perhaps with music being played or prayers being said or words of love being expressed?

I don’t know about you but I know what I want. I want a peaceful and dignified death.

A profound death is the choice you’re not being offered because the doctor is not asking you enough questions. Okay, they should ask you about CPR, just in case you’re one of the few lucky ones that will benefit, but there is more to be asked. They should also ask, “How can I respect you and help you as you die?”

But doctors don’t ask this. Why? Because they are afraid of death, because they care too much about you and they don’t want you to die, and because they don’t want to fail. I can understand that doctors have good reasons for not talking about death. Good reasons because they’re good people with caring hearts. But these reasons can get away in the way of us having the opportunity to determine how we want to die.

So what can we do? When the doctor says, “Would you want CPR?” give him your answer and then tell him that there are other things he should know about where and how you would want to die too. Now some doctors won’t even ask you the CPR question because they want to avoid the topic so you are going to have to begin the conversation. You’re going to have to teach the doctor to be brave and to be willing to talk with you. You’re going to have to ask for clear answers and for the support you need. And if you find your doctor won’t talk to you, find a different doctor who will. And if after talking with your doctor, you realize they don’t respect or support your choices, find a different doctor who will.

You deserve a good death.

Got a question? Ask Viki.

I Am in Pain, What Can I Do?

One of my hospice patients just called and said that his pain is at a 7 and he doesn’t know what to do. He saw his doctor and the doctor didn’t take care of his pain and said, “See you in two days.”

Are you kidding me? I would like to see this doctor stay at a pain level of 7 for 48 hours. The doctor wouldn’t put up with this if he was suffering and would make sure his own doctor took care of him. But he ignored my patient. When I hear about his happening, it makes me so angry.

Now I know, you must be thinking, “How can this be?” Well this happens a lot for many reasons. Let me tell you a few so you can know how to fix it.

1. The patient doesn’t speak up enough about the pain. If you don’t tell the doctor, how can he help you? If this is you or your loved one, do not leave the office until there is a new plan in place. And the plan should include a time limit for it to start working. If the new pain medicine hasn’t gotten your pain under control within a few doses, then you should call and tell the doctor and then he should adjust the plan.

2. The doctor doesn’t know how to take care of pain symptoms. Okay, now you are really surprised to think of a doctor that doesn’t know how to take care of pain. Well again, this happens all of the time. Most doctors can handle basic pain management but many are uncomfortable when they have to deal with the increasing pain that happens with cancer or other progressive diseases.

3. Maybe you are from a culture where you are encouraged to be brave and stoic about your pain. Now the doctor will end up misunderstanding about your pain and you won’t get the care you need. The doctor will ask you, “How is your pain on a scale of 1-10” or he will use the happy face chart. This works fine if you tell the truth about how much you are hurting but not if you don’t. So speak up and admit you are in pain.

4. Finally, and this will sound harsh but there are some doctors that don’t seem to care. If so, immediately get a new doctor. You should not go through your life in terrible pain and especially if you are dying. You should not have your final days be in pain. If you are dying and your pain is not being taken care of, then ask your doctor to put you on hospice. Hospice doctors and nurses are really good at taking care of pain and suffering.

Got a question? Ask Viki.

What is The K.I.N.D. Method?

The K.I.N.D. Method

K – Knowledge

I – Inquire and listen

N – Need to brainstorm

D – Decide and Do it

The Kind Method is a problem solving approach to making ethical medical decisions. The four step process is based on four core concepts: Knowledge, Inquire and Listen, Need to Brainstorm, and Decide and Do it.

The first step is Knowledge. If you don’t know enough information, you won’t be able to make a good decision. Patients make this mistake all the time when they don’t find out more about their disease and their medical options. Doctors also make this mistake when they don’t find out about the patient’s preferences and quality of life goals.

The second step is to Inquire and Listen. This is where most of us get stuck. We don’t ask enough questions. We don’t ask the right questions. And when people tell us the answers, we don’t listen well enough. Or we don’t like the answers and we refuse to listen. We need to ask better and to listen better.

Once you have collected enough information, then you can begin to figure out what you should do. Don’t just jump to the first thought that enters your mind. Instead do step three. You Need to Brainstorm to figure out your options. What is brainstorming? It is coming up with at least three different choices that you can consider. The choices may be as simple as: 1. Do what the doctor said, 2. Don’t do what the doctor said, or 3. Do only part of what the doctor said. Now that you have these three options, you can begin to seriously think about your choices and how each choice would affect your life. Think carefully because it is your life we are talking about.

Once you have done this, now it is time for step four. The fourth step is to Decide and Do it. At this point, the deciding may be easy but the doing may be more difficult. But if you have gone through the first three steps, you can feel more confident that you are making the right decision and it is time to take action.

Got a question? Ask Viki.

Helping the Family Make the Difficult Decisions

Doctors tell me all the time that they struggle with families that aren’t respecting the patient’s wishes or are not making wise decisions for their loved ones. Over the next months, I will give you many techniques you can use in these situations. Here are two to help you begin.

A dear friend of mine was sitting at the bedside of his wife after her massive stroke. They had been married for over 50 years. As I sat with him he said to me, “The doctors keep asking me what I want them to do. Well, what I want is for them to keep Ruth alive no matter what.” I nodded and listened as he continued. “If they asked me what Ruth would want, she would say, “Let me go, I don’t want to live like this. But the doctors don’t ask me what she wants, just what I want.” I was so surprised that in his grief he understood the difference.

So here are two techniques you can begin to use to improve end of life decision conversations. First, stop asking, “What do you want us to do?” And instead ask, “What would (the patient’s name) want us to? What would (the patient’s name) be telling us to do in this situation?” And if the family member responds, “What I want is …” you stop them and re-clarify that they are supposed to speak as if they are patient. You can always use the classic question, “If the patient was able to wake up for 5 minutes and understand what was going on, what would the patient say?” The trick is to keep silent after the question and let the family member struggle with the question. The silence in the room helps the person understand the significance and the weight of the question. Don’t rush them as they haven’t been thinking about what the patient would want; only what they would want.

Secondly, you need to educate the family about their role as the decision maker early on. Explain to them that they are supposed to make the decisions based on the patient’s values, not what they would want. Tell them that they are supposed to speak with the patient’s voice and wishes, even if it’s hard to do. I think we need to acknowledge how difficult this job is for the family member and to validate their struggles. “I know this must be very difficult for you, but it is important that we respect your loved one and follow their wishes.” If we can begin the conversation with the right questions and to educate families regarding their role, it will provide a good beginning to improving end of life communication. More to come on this topic later.

How Can the Doctor Ask Me to Kill My Mom?

The doctor just told you that you have difficult decisions to make. She said that you have to decide if it is time to let your mom die. Do you want us to take your mom off the ventilator? Would your mom want CPR? How can you decide? Well I have a gift for you. It is not your decision. It is your loved one’s decision. You are just the representative of the patient and are supposed to be speaking as if you were the patient themselves. You are supposed to use the values of the patient, not your values.

Here is where your mom’s doctor went wrong. The doctor should have asked, “What would your loved one be telling us if they were able to speak right now? What would your mom say about wanting CPR? Would your mom want to continue on like this? These are the right questions. But instead the doctor burdens us by making it seem like it is our choice. But it shouldn’t be our choice. We are the surrogate decision maker, the substitute just filling in for the patient. Different states call it different things: durable power of attorney, agent, proxy or surrogate. But no matter what we call it, the rules are the same. You are supposed to honor the patient’s wishes,

I know the doctors never told you this before. But let me explain how it works, it is something called the substituted judgment standard. We are supposed to speak with the voice of the patient. As the decision maker, you are supposed to think about everything you know about the patient, what they have told you in the past, what their values are and what is important to them. Then using this information, do your best to make the decision you think they would make.

What if after considering all of this, you realize your mom would say, “I don’t want to live like this, I would rather die.” Then you have to tell the doctor the truth. I can hear you saying, “But I don’t want her to die.” Of course you don’t. But you have a job to do and it is up to you to be brave. You need to do the respectful and loving thing and tell the doctor what she would say even if it is not what you would choose yourself. This is the gift you can give your loved one by speaking for them one more time. Otherwise you are betraying your loved one and disrespecting their beliefs and their life. I am not saying this is easy to do, but it is the right thing to do. And usually doing the right thing is doing the hardest thing.

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