So many people ask me what they should be thinking about when making medical decisions. Whether you are making your own decisions or having to make decisions for others, there is a lot to think about.
Your doctor or your loved one’s doctor will talk to you about the medical aspects of any health-related decision. But that doesn’t mean that you are limited to thinking only about medicine. It may be important to consider the financial costs associated with the treatment plan, if the patient’s religion should play a role in the decision and whether there are cultural issues that come into play. Think about the overall picture of your loved one’s life. In The Caregiver’s Path to Compassionate Decision Making, I offer lists of questions to help you understand the whole picture.
It would be nice for the decision to be as simple as asking, “Will the treatment work and what are the side effects?” But life isn’t that simple. What if you were about to make a medical decision that allowed something to be done to the person’s body that was forbidden by the person’s culture or religion? You might have chosen a certain treatment to save her life, but because the patient received that treatment, she will no longer be able to move on to the hereafter. Yes, the medical decision was a good one, but how the decision will affect the person’s life, based on her personal belief system, was not.
If the person you are making decisions for is very religious, then it would be good to find out if there are any religious rules or values that you should consider in your decision making. I know that when I work with my hospice patients, it is important to know if there are certain rites or blessings that have to be performed before the patient’s death. I don’t have to agree with what the person wants, but if I am the caregiver, then I need to do what I can to make sure the person’s religion or culture is respected. I will need to call in the appropriate religious leader to take care of the spiritual needs of this person. If the person is not religious or spiritual, then you will need to respect this and leave religion out of the decision making process.
For most people, the financial costs of the medical treatment will need to be considered or you may be putting the person in financial danger. You may be in charge of making only the healthcare decisions, but you should make sure that you or somebody else checks with the insurance company to find out whether or not it will pay for the treatment and to get the proper authorizations. Don’t let a simple mistake like forgetting to call the insurance company to let them know that your loved one was admitted to the hospital put your loved one in financial distress. Making decisions without using the financial questions could bankrupt your loved one. Our goal of protecting the person should include protecting his or her wallet.
For a list of questions you can use when making decisions, go to the resource page and download the list from the excerpts from The Caregiver’s Path to Compassionate Decision Making – Making Choices for Those Who Can’t.
Have a kind and respectful day.
My nephew had surgery a few days ago and he is still in a lot of pain. He told the doctor that he has a pain level of 8 and the doctor told him that he would come in in the morning and address his pain level. I don’t think this is right. How can the doctor just leave him suffering all night? What can I do?
I can’t believe this still happens. Patients are not supposed to be in pain and should not be left in pain until it is convenient for someone to deal with it. Hopefully by now your nephew has been taken care of but the next time, you can ask the nurse to call the doctor who is on call that evening and ask him to order the right pain medication.
The question you might want to ask the doctor when he or she comes in the next morning is, “How would you like to suffer all night with a pain level of 8? Would you leave your own kid in that kind of pain?” I would love to hear his or her answer. As caregivers/family members, we have to advocate and sometimes get loud in order to make sure our loved ones get what they need.
I do have compassion for healthcare professionals because they see so much suffering, like those in the military. The only way they can cope is to distance themselves from what they are seeing. This doesn’t excuse not taking care of your nephew but I just want you to understand that usually, it isn’t that doctors don’t care—it is because they care too much.
Have a kind and respectful day.
People ask me, what can I do to make my loved one’s life a little better. Here is this weeks Kindness Reminder. To sign up for more fun and thoughtful ways to say I care and I am thinking about you, go to my website at KindEthics.com and sign up in the box at the top right.
When people live in institutions, they don’t get to experience the joy of a home cooked meal or the ability to cook the old family recipes anymore. And even those who don’t live in a facility, they still aren’t cooking like they used to. A good friend of mine, Jacque, used to prepare a stew or pot roast in a crock pot for me to take to my Dad’s house. He lived with his two sisters and the three of them loved the smell of the crock pot cooking all day.
If you can’t cook for the person, perhaps you can have someone prepare a favorite recipe and deliver it to the person. At the assisted living/dementia facility where my dad and my aunt lived, they had a family cooking area. My husband baked a chocolate souffle for them from scratch. They sure enjoyed watching him put it all together and they really enjoyed eating it.
Have a kind and respectful day.
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.
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.
DNR (do not resuscitate or no CPR) does not mean do not treat or do not care. A warning for all of us.
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.
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
I just got a bill from the hospital, but I don’t think it is right. It says I owe money but I have insurance. Why isn’t the insurance company paying my bill? What do I do next?
There are so many reasons your insurance isn’t paying the bill. And I know that it can get overwhelming as you receive bills from different offices, different doctors, different labs and from people you’ve never even heard of. Instead of getting frustrated, ask for help. If the person you’re working with is not helping you, ask for someone else in the department. Unfortunately many people who work in medical billing are often under trained, underpaid and overwhelmed. So it may take talking to many different people to get the help you need. For me the first thing I do is to take all the bills and organize them by date of service. Then I can match what was done to me with the bills I have in front of me. And then I begin following the instructions I have listed below.
Let’s start from the beginning of the story and find out what might have gone wrong.
1. When you went into the doctor’s office or hospital, did you give them your correct insurance information? Not the old card, but the newly updated card?
2. Do they have the right address for your insurance company?
3. Have you been paying your insurance premium so your insurance is still in place?
4. If you have two insurances, did you tell them which insurance is primary, so they billed the right insurance first? Do you know which insurance is your primary insurance?
5. Did the office or hospital ever send the insurance company the bill? Surprisingly, the billing staff does not always do their job so sometimes the reason the insurance doesn’t pay the bill, is because they never got the bill. Call your insurance directly and ask if they have a copy of the bill and if so, why they didn’t pay it? If they don’t have the bill, ask them for a direct name and fax number that the bill where the bill can be sent. Then give this information to the doctors or hospital’s billing department and then follow up with them in one week.
6. Now let’s talk about the referral/authorization process. For many people’s insurance, you have to have a referral before you see certain doctors or receive certain tests or procedures. Or if you are in the emergency room, have someone in your family call your insurance right away and get the authorization for you to be in the emergency room. Did you get that referral? Did the office staff call for your referral? Did you call the insurance company to make sure the referral was done before your surgery? And did you make sure that all of the doctors that would be working on you during your surgery are covered under your insurance plan? If you don’t get the referral, you may be responsible for the entire bill and you definitely don’t want this. Never assume that it is all taken care of. Make sure you call the insurance company and get the referral number yourself. They should also send you a piece of paper that tells you that you have been okayed to have the test or surgery or see the specialist that your doctor recommended. You have to be an active participant if you want the bills to get paid.
7. Maybe your doctor’s office did everything right, had the right insurance card, got the referral ahead of time, billed the right insurance but still there is no payment. Now it is time for you to get on the phone and ask the insurance company what the problem is and why there is a delay in sending out the payment. You may also want to go to the doctor’s office and have the billing person call the insurance company while you wait. That way, if there is a question, you can be there to help and to make sure it got done.
8. Now many doctors offices use outside billing departments and the person you need to talk to will only be available by phone. This is when you have to hold your temper. I know you are frustrated but if you yell at them they won’t help you and you’re going to get stuck with the bill. So calmly, talk to the billing person and find out what they think is going on. You can offer to call the insurance company yourself to help them solve this problem. Since you want them to be on your side, remember that they will be more willing to help a polite person than a screamer. Thank them for all of their effort even if the problem isn’t completely solved because you will probably be working with them again when they mess up your bill the next time.
9. Many times, the bill itself was not created correctly. There are codes and details that must be typed in and sometimes these are typed in incorrectly for whatever reason. This is when you need to ask for a billing manager to help you check that the codes that were used were the right codes and that the details on the form match your insurance and personal information. It may be as simple as your insurance number was typed in incorrectly or it was sent to the wrong address.
10. After you do everything you can to get the correct bill to the correct department of the insurance they still may not pay your bill. If they won’t pay the bill you can appeal their decision. You will need to ask the insurance company how to appeal their decision and what you will need to do to provide the information they will need to change their minds. Sometimes, the doctor needs to send more documentation or a different code needs to be used. Even after the appeal, you may still be responsible for this bill. The worst thing that happens is when you didn’t get the appropriate referral and now it is too late. This is why getting the referral is crucial before you go to specialist, go to the emergency room, have the procedure or have the surgery.
11. I want to caution you to not get frustrated and to stop working on this situation. The doctor’s office will eventually send you to collections and the collection agency will eventually report your delinquent bill on your credit report. Then you are in worse trouble. The collection agency knows even less about getting the insurance company to pay and they are not particularly interested in helping you, just getting the money from you. And they will sue you. This is when you have to take immediate action before the collection agency takes action against you. Call the insurance company for help and go back through the steps above. The doctor’s office will not help you at this point as they have referred you to collections. You can try begging the doctor to take your bill out of collections but that rarely works. The doctor’s office or hospital has already tried to get you to pay for months and are frustrated with you. Please try to take care of this problem before it gets to this point. If it gets to this point, it may be too late now and you may be stuck paying this bill.
If you really do owe the money after the insurance paid their part:
Now your insurance paid, but now the doctor is asking you for money that you don’t think you owe. There can be lots of confusion. You may be right or you may be wrong. The first thing you want to look at is something called the EOB or the explanation of benefits. This is the form the insurance company sends the doctor and hopefully you, which explains why they paid what they paid and who was responsible for the balance. When you look at the explanation of benefits you are looking for the word’s “patient portion” to figure out how much you owe. This is another place where the billing department may make mistakes. They may forget to do the write off that is required by the insurance contract with the doctor’s office. And they may be billing you for the wrong amount.
You may also be the problem. You may not understand what your policy requires and what your portion of the bill should be. Before you get really angry, call the insurance and have them talk you through it. If the doctor’s office is wrong, ask them to make the corrections and to let you know when it’s accomplished. Put it on your calendar to call them in a week to make sure it really got done. You don’t want a surprise letter from a collection agency in your mailbox.
If you do owe the bill, whether it’s to a doctor’s office or a hospital, if you call right away they may be willing to set up a payment plan. The longer you delay, the less likely they will be to work with you. They may also have a special program set aside for people who cannot pay their bills. Again, it is better to communicate directly and work with them to solve these issues. The billing department may also be able to help you sign up for services such as MediCal or MediCaid.
I have to hire a new caregiver for my dad. I get so tired of having to take time off of work to train the new person. Is there anything I can do to make this easier?
Yes, I recommend creating a caregiver manual just like you might have an employee manual at work. The way to do this is when you are training this new caregiver, write down everything you are telling the new person. Write down things like how your dad likes his sandwich made or what time he takes his naps. Create categories such as food preferences, activity preferences, clothing preferences, schedule preferences, medications, allergies, emergency numbers etc. Whether you write it down in a notebook or on the computer, keep adding to it as you train the person. Then give the new caregiver a copy so they can refer back to it. You can also ask the caregiver to write notes in it as things change or as she/he learns new things about your dad. This way, the next time you have to hire a caregiver, you have a head start. You can give the training manual to the new person to read before they start and they can use it as a reference for those first days when you leave them on their own. This doesn’t mean you won’t have to train them. You just won’t have to make yourself crazy trying to remember if you have gone over everything with them and you won’t forget to mention something important. (Keep an extra copy in a safe place. You don’t want a disgruntled employee to take off with your only copy.)
Have a kind and respectful day.
I’m kind of confused because I don’t understand the difference between hospice care, palliative care and comfort care. Is there a difference between these and if so, why do each of the doctors say different things? What are they trying to tell me?
Great question. I think sometimes even doctors and nurses get confused by these different words to describe pain management and end-of-life care. The words do mean different things but many times they are used to describe the same thing, the support your loved one will get during the dying process. In practice, doctors may be saying the same things even though they are using different terms. Let me try to explain.
Let’s start with palliative care. This is the most misused term because it describes both pain management when you’re healthy and the support you receive during the dying process. Palliative care is the global word to describe all of the care that is related to relieving suffering. Let me say it in a different way. To palliate means to relieve or lessen without curing, to mitigate or to alleviate. So sometimes the patient may go to a palliative care specialist, even though they’re not dying, to help them get their pain under control or to alleviate their physical symptoms. They’re not dying, they are just asking for good pain management. It frustrates palliative care specialists when people think that all they do is take care of the dying. This isn’t true. They take care of the suffering of all patients. And one group of these patients happens to be the dying.
Hospice care is for people in the dying process. A patient can get palliative care without dying but you can’t get hospice without being a dying patient. There are also different kinds of hospices, both volunteer hospices and medical hospices. I volunteer at a volunteer hospice and we provide respite care and support for the patient and family. We are like a good friend who stops by to help out. A medical hospice will provide volunteers as well as visits from nurses, doctors, social workers, chaplains and nursing aids as well as providing the patient at no cost, symptom management medications, medical equipment and oxygen etc.
Hospice care can also be found in different locations. It doesn’t always happen in the patient’s home. It can also be found in an outpatient hospice, an inpatient designated bed in the hospital, in a skilled nursing facility, a board and care or assisted living facility. Your location shouldn’t determine your eligibility for hospice, although there are a few facilities who are not accredited to have hospice patients in their facility.
Now let’s talk about comfort care. This is a word that is most often used inside of a hospital. At some point, the doctor may come in and talk to the patient or the loved one about putting the patient on comfort care. Here is what they’re trying to say. They are saying that, at this point they have nothing else they can do to cure your loved one’s disease. But what they can offer you is to keep them comfortable and to help them have a good death. It may not mean that your loved one is dying immediately but that the aggressive treatments that they have been trying are not working to get them better. And now they want to focus on relieving the suffering and keeping your loved one comfortable. They are not abandoning the patient but they are changing the focus from curing to caring.
Now maybe you’re saying to yourself, isn’t the relieving of suffering like palliative care? Isn’t comfort care, palliative care? This is where it gets confusing again. Remember that palliative care is for both when someone is fighting their disease and when a person is in the dying process. In reality, the patient should be getting palliative care throughout their medical treatment experience. But sometimes palliative care is brought in very late and only as part of the comfort care (dying) plan. So you will want to speak up and ask for good palliative support while your loved one is healing and later on when they are dying. Patients should not be suffering or be in pain. Doctors now know how to take care of these symptoms, but if your doctor doesn’t or won’t help, then ask for a referral to someone who does. But be careful because some doctors will think you mean palliative care as in dying support. Make sure you explain what you are asking for, recovery support or dying support.
So, back to your question: If the doctor in the hospital says comfort care, they mean dying care. If they say palliative care in the hospital, they probably mean dying but they might just mean suffering care. You will need to clarify this with them. If they say hospice, then that means you will probably be discharged from the hospital to go home to die.
If a doctor wants to make the patient comfort care in the hospital, the patient can probably go home on hospice or perhaps to a facility that can handle their medical situation with hospice support. If your loved one wants to die at home, you need to advocate for them and say, “They would like to go home on hospice.” You need to speak up about where and how your loved one would like to die. They are entitled to a good death and so are you.
Have a kind and respectful day.