Patient (Patrick)

I am feeling more and more tired everyday

They are doing ok. They will come visit me this week end.

I am out breath everytime time I walk to even use the bathroom and it become for me to even get out bed to chair. I do not  have any appetite. No taste in my mouth.

The pain medication you prescribe takes the edge of the pain but I am afraid to take too much . They make me feel so weak and am afraid of constipation.

From the way I feel , I realized my condition is getting worse and it become more difficult for me to perform even light activity without experiencing shortness of breath.

Indeed I had a long discussion with my wife last night  and I spoke to my children about how I am feeling now. I do not want any tube down my chest or chest compression if the worst happen to me. I want to be home with my family and rest. I am tired.

I know we spoke about hospice care few months ago and I read all the brochures you gave me.My wife did a lot of research on the computer also . It was a lot of information but I think I got the concept . 

My only concern is toward the end if you know what I mean. I am afraid to start gasping for air because that will cause great great anxiety to my family to see me like this specially my oldest son

I am not too sure that my children understand exactly the hospice idea  or they just do not want to discuss it with me. If all possible, can you call  my older son ? He is really having a hard time.

Regarding the steroid, do I really need to continue taking it.

I think it is about time I spoke to a priest. Since I have been diagnosed, I stayed away from church and not even pray anymore. Is there a priest available to talk to ? No rush.

I think I have all the medications I need for now. I just want to thank you for your help Jonathan to me and my family. My kids will be here this weekend but please try to call my oldest son Fred if you get a chance. I am very worried about him.

Provider: Jonathan Abayev

How are you today Mr. Adams?

How are the kids/grandkids?

How is your breathing?

Eating well?

How about your pain?

The reason why I came by this early today, is to speak to you and your wife to discuss your current condition. What do you know about your current condition as of this point in time?

Well, yes. The truth is that for the past 6 months, we have maximized the therapy for your pulmonary fibrosis. We’ve been giving you a lot of medications to try to breath easier. You have lost a lot of weight and I am afraid that getting around for you even into a chair may no longer be an option. Your trouble breathing will progress and it will take a heavy toll on your body. I spoke to your pulmonologist today, and he and I both believe that the way your pulmonary fibrosis is progressing, you may only have a couple of months left in your life. I know that if anything were to happen to you, you would not want to be resuscitated or admitted to an ICU for treatment.  Mr Adams, I know this must be hard to hear but the best thing as of this point in time is to get you home with hospice services.

Hospice is a special form of care that we provide for people such as yourself who are in the late stages of their illness. We focus on controlling your pain and symptoms at home. You see, we want to help relieve your suffering while at the same time giving you the best quality of life for you and your family. Do you know what I mean?

Well, there is a number of ways we can ease your pain and suffering. First off, pain control with medication with some oral morphine that you can take every 4 hours. Also, I know you get somewhat anxious when you  have trouble breathing, we can give you some medication for that when you need it. We will also give you some oxygen as well. At the same time, we can also continue some of the steroids your have been on. What do you think?

Of course I can speak to your son. I will ask the chaplain if he can come right away to talk to you.

I know it is a lot to understand right now. If you ever have any questions about this matter or any other, just ask the nurses to call me. In the mean time, do you have all your medications you need?

I will come back tomorrow. Mr. Adams, will your children be by at some point, I would like to speak to them as well?

I’m sorry for all this today and I will be here for you through this process. Till this weekend then.

Patient: (Jonathan Abayev)

Hi Dr. Patrick.

I am not feeling well at all. I can’t get even out of bed into a chair without gasping for air.

Yes my children are fine but busy with their own lives and own children.

Yes, my wife just came so she may want to hear this as well. My children will be here this weekend but you can talk to us for now.

Well, I know now that I have not been feeling any better, and I can see for myself that my breathing is getting harder. I feel tired and anxious too.

Well I did speak to my wife about this issue and I more than her agree that life saving efforts may not help me in the long run.

Yes I feel the same way. My wife still doesn’t though.

Yes we have taken a look. My wife doesn’t want to hear anything about hospice. I think its an idea worth exploring Dr. Can you explain to us the concept one more time?

Ok, I will discuss it with my children this weekend. What will I need though?

A 6/10 Dr.

Yes I haven’t gone in 3 days Dr.

Yes I have no appetite. I guess I can try the stimulant.

My kids will want to talk about this some more.

Yes Dr. please.

I guess I can talk to someone.

Ok, please set up the meeting with my kids this weekend. Thank you for stopping by.

Provider (Patrick)

Good morning Mr. and Mrs Adams . How are you feeling today Mr. Adams ?

How is your family doing ? I have not seen your children for a while.

Mr. Adams , I am here to give you an update regarding your condition. It is a good time ?

Do you want your children to be present for that discussion as well.

I know the last time we spoke your wife inquired about new experimental treatments. At this point , we do not any new protocols to offer you. Your condition has progressed over the past six months and you had four recent admissions for worsening shortness of breath  with even light activity.

What is your intake regarding your condition at this point?

We have used so far various approach to treat your disease including very high doses of steroids.  We had a meeting today with the whole team to discuss your care .  The steroids do not help alleviate your symptoms as much. At this , Our team is very concerned that you could to respiratory arrest and we want to make sure to know exactly how aggressive you want us to proceed .

Few months ago, we had that discuss and you expressed very clearly that you do not want to go ICU and no code. Do you still feel the same way ?

I want to discuss with you and your wife gain about home hospice. I gave you some brochures and informations the last time you were here. Did you have a chance to look at them ?

The concept of home hospice is to provide patients with terminal illness and their family the care needed in the comfort of their home . The primary goal of care is to help the individual and his/her family to maintain the highest quality of life in the last stages of the illness; without the fear of dying in pain, alone, or without personal dignity.  This includes managing pain and other symptoms of the illness rather than providing treatment for the illness.  Emotional support for the individual and family is also provided. You may need to make some modifications in your home setting to make it easier for you at home. Let me know if you will need any help in that process.

We will make sure you have everything you need and we will provide you pain medication and home oxygen  as well so you can feel very comfortable. How is your pain now ?

I know you are concerned regarding constipation , we will need to continue your stool softener .

You have also significant weight loss. You should try to eat small portion and drink your ensure.  We can also  start you on an appetite stimulant .

Do you have any questions for me ?

Do you want me to set up a family meeting with your children ?

Let me know if you need to a speak to a priest , we have a great priest available on site ?

Mrs. Adams, let me know if you will need a letter to give to your employer so you can take time off to be with your husband.

I know it is a lot to deal with but I want to reassure myself  and the whole team is available for you to help you in that process. Do not hesitate to have the nurse page me if you have any additional questions. I will stop by later to check on you.