What is the difference between palliative care, comfort care and hospice care?

Dear Viki,

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.

Overcoming the 20 second problem or How I learned to save time and improve the PT/MD relationship.”

Recently, I gave a lecture in Las Vegas and a few weeks later I heard back from a physician, who did one simple thing I taught her and changed her entire practice. She overcame the 20 second problem. What is the 20 second problem? Research has shown that when you sit down to talk to a patient and ask, “What brought you here today?” you will interrupt within 20 seconds of them beginning to tell you their story. Now, you’re not interrupting to be rude, you’re interrupting to ask clarifying questions. How much pain? What kind of pain? How long have you had this pain? But unfortunately, once you begin asking questions, you may not allow the patient to get back to telling you the rest of their story. Without hearing the whole story, you may misdiagnose or may start heading down the wrong path because you have missed some important details. This wrong direction will waste your valuable time.

The other thing that happens is that the patient will then say as they’re walking out the door the, “Oh by the way” question or the “One more thing doctor” question. I know this drives you crazy because you have already spent your time with this patient and are ready to move onto the next person. But the reason you have the “One more thing doctor” question is because you didn’t listen to everything at the beginning of the appointment.

So what can you do? Sit quietly and listen for one to two minutes. Research has shown that all it takes is one to two minutes for the patient to get their whole story out. Now this may feel like an eternity to you but if you can do it, you will decrease medical errors, improve medical outcomes and increase patient satisfaction. The time will be well spent. You will actually become more efficient and effective when you allow the patient to be heard at the beginning of the appointment. This may seem counterintuitive, but it really works. The doctor in Las Vegas discovered how much this communication technique worked for her.

I also recommend that you have the patients write out a prioritized list of questions so you will know what they’re there to talk about. Tell them to mention the most important items first. Explain to the patient that it will make it easier for you to help them by being prepared and getting right to the point. Patients can be taught to be better patients and to help us to help them.

Have a kind and respectful day.

The day my dad was shot in the dementia unit.

Let me reassure you before the story begins that everything turned out all right. My dad fluctuated from mild to moderate dementia. When he became confused, his delusions would frequently return him to World War 2. He lived in an Alzheimer’s/dementia unit, but he was quite high functioning. One day I got a call from my dad and he tells me that he’s been shot by a small caliber pistol. He sounded alright and in no pain on the phone, so I began to ask questions. “Where were you shot dad?” He replied, “I have been shot in the stomach but it is probably not too bad because they were bullets from a small caliber pistol.” (Well, I didn’t know what size bullets come from a small caliber pistol but since he wasn’t too concerned, then neither was I.) I asked him if the people who shot him were still in the building. “I think they’re in the hallway” he said with a very frightened voice. I asked him if it was okay if I got the nurse to come and check on his wounds. He said it was okay but that she should be careful. I called the nurses station and explained the situation. I said that I thought that my dad was okay but perhaps his description of being shot in his stomach meant that he was having stomach problems and just couldn’t report symptoms accurately. She said she would go right down and then call me after she checked on him. I got a call a few minutes later and she said that he seemed to be just fine but he had again mentioned that he had been shot by a small caliber pistol. I asked, “Could you do me a favor and take out the bullets?” There was silence on the other end of the phone. I explained that he wouldn’t rest comfortably if he still thought the bullets were in him and maybe she could just push on his belly and tell him that the bullets had popped out. She thought it was a great idea and went in and to remove the bullets. She came back to the phone and let me know the bullets were out and he was feeling better. At this point neither of us thought it was funny. Even the nurse was serious about taking out imaginary bullets and helping my dad. (Now I knew it was funny but at the same time, my dad was so afraid of the people lurking in the hallways, I wasn’t in a laughing mood.)

How did the story end? After the nurse left, he said he felt much better but he was still very frightened because the shooters were still in the building. I told him that I would send in the special forces and they would clear building of the enemy. I told him that the special forces were so stealth that he wouldn’t see them or hear them in the hallways. It would just be done. (I don’t know much about the military so I had to think fast and try to figure out something that sounded realistic for him.) I called back later to see if my dad was doing better and he was relaxed and comfortable. He felt better and was able to get a good night’s sleep because I had protected him as he had protected me throughout the years. Each time my dad would come out of his delusional state, which fortunately only lasted for a few hours at a time, he would say to me, “I think I was confused right?” And I would respond, “Yes you were, but you’re okay now.” I realized at that time that it was better to choose to comfort someone with dementia rather than to argue with them and make them wrong. I’m not saying we shouldn’t strive to get people more engaged in reality, but when they reach out and tell us they are suffering, we should do our best to support and reassure them. I love telling this story because it makes me think of my dad.  My dad was a wonderful person. He died five years ago this month and I would give anything to hear one of his crazy stories again.

Have a kind and respectful day.

TV Series and Website Seeking Stories on How We Die

I am posting an extra blog this week because this important and urgent.

I am helping with the How We Die Project and I think this might be something you might be interested in doing as well. They need stories about the good, the bad and the ethically complicated cases we have seen. This is an amazing opportunities for the public to understand the complexities of dying in hospitals, homes, nursing homes, etc. Please forward this to your nurses, physicians, social workers, chaplains, respiratory therapists, bioethics committee members, public and private guardians and the patients and families you serve. This is a national project so please forward this to anyone who might be interested across America. See below for more information. Thanks, Viki

TV Series and Website Seeking Stories on How We Die*:

A new website and TV series is looking for first-person stories from
patients, their families, loved ones, and health care professionals about
how personal experiences have shaped what we believe about death and dying.
Stories are about the decisions we make for ourselves, for loved ones, or
for patients at the end of life.
The series, tentatively titled “Stories,” is being developed by Marc N.
Weiss, creator of the long-running PBS series P.O.V. and Tom Yellin, a
veteran network news and public affairs producer.

Our pilot episode will explore experiences that tested or challenged
people’s values and beliefs about who decides when and how we die, and what
role, if any, government and healthcare institutions should play in those
decisions.

Please visit the site and submit your story! www.how-we-die.org

Have a kind and respectful day.

“Cutural Communication Strategies”, “Communicating with Dying” and “Insiders Guide to filling out your Advance Directive” Newsletters are Available.

If you missed the last newsletters, “Cultural Communication Strategies”, “Communicating with the Dying” or the “Insider’s Guide to Filling Out Your Advance Directive”, you can still get them if you sign up under the receive newsletters section on the lower right side of the blog. When you sign up you will get the bonus office visit toolkit as well as the back issues of the newsletters. I usually send out one newsletter every month so you won’t be inundated with emails. And of course I respect your privacy and won’t release your information to anyone else.

Have a kind and respectful day.

“Age in Place – Putting Your Plan Into Action” Interview with Mark Hager, the founder of Aging in Place. June 24th, 9:30 AM pst

“Age in Place – Putting Your Plan Into Action” Interview with Mark Hager, the founder of Aging in Place. June 24th, 9:30 AM pst. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

Mark Hager is the founder of AgeInPlace.com, a website focused on major topics around aging in place, including home modifications, real estate, assistive technology, finances and others. Mark also founded AgeInPlacePros.com, a website for those who provide services and goods to older people, focusing on local businesses meeting community needs brought on by the age boom. Mark is an advocate of planning responsibly for late life to lessen the impact on people, their families and communities. As well as, assisting local businesses prosper while serving those in their communities.

He will be answering the common questions people have about aging in place.

Have a kind and respectful day.

Taking The Car Keys Away Part 2 – Dealing with the Emotions

I have been surprised by how many people have contacted me about the issue of taking the car keys away from a loved one. What I want to add to the discussion is that we have to remember to address the emotional issues being experienced by the person losing their driving privileges. They should be angry. They should be sad. These are normal emotions as they come to terms with not only the loss of driving but the loss of their mental and physical abilities. It is a good idea to sit with them and let them speak their mind. All you have to do is listen. Don’t defend yourself. Don’t defend the doctor. Just listen. As you hear their words, think about the day when you will lose your driving privileges and find compassion for your loved one.

One technique you can use is something called active listening. With active listening, what you do is to repeat back the words and the emotions you are hearing. For example, when your mom says, “I am so mad at you for telling the doctor that I shouldn’t be driving anymore.” What you can say is, “I understand that you’re really mad at me mom and that you wish I hadn’t told the doctor.” Your natural instinct is to defend yourself or to explain the reasons you did what you did. This conversation is not about facts, it is about emotions. Just hear your mom’s heart and allow her to experience her feelings. It will probably take a while as you listen and acknowledge her feelings. As she feels heard, she will calm down. And it may take a number of conversations so don’t be upset about this. Don’t you sometimes have to vent more than once about something you are dealing with in your life? Just accept that this is part of her healing process. Hopefully over time, she will come to terms with this loss and move on in her life. But don’t expect her to be happy about losing her ability to drive. It will always be a disappointment.

Lastly, I encourage you to take a look at the first part of the HBO Alzheimer’s special found online at http://www.hbo.com/alzheimers/. It is called, “The Memory Loss Tapes” episode. About halfway through this first section, a woman whose doctor has recommended she stopped driving is put through a driving evaluation test. It is shocking to see how bad it has gotten and that to realize that she just recently lost her privileges. This woman has been a danger on the road for a long time. Please take action sooner than later and save lives.

Part 1, When should I take away the car keys? http://tinyurl.com/c9zjqp

Have a kind and respectful day

“The World of the Child Who Has Lost Their Parent” interview with Margaret Allan on June 10th at 10AM, pst

Margaret Allan is a LCSW, Licensed Clinical Social Worker with a PsyD, a clinical doctorate in psychoanalysis. She is affiliated with the Institute of Contemporary Psychoanalysis in Los Angeles and is a member of the National Association for Psychoanalysis in Clinical Social Work. Margaret is a psychotherapist in private practice in Westlake Village, CA and works with Hospice of the Conejo as a facilitator in their Family Services, with individual adolescents and in a grief support group for adolescents that meets on Tuesday evenings at HOSPICE of the Conejo. http://www.thewisesource.org/hospice/

Have a kind and respectful day.

Wheelchair Etiquette and Safety aka The Day Aunt Berda Rolled Away

Dear Viki,

Why don’t people help when they can see you are in trouble? The other day I was trying to get my father in his wheelchair through a narrow doorway when some guy pushed his way through ahead of us and then let the door slam on my father’s foot.

As someone who has been pushing relatives in wheelchairs for 25 years, I know how difficult it can be when nobody will open the door or give you a hand. I also hate it when someone parks really close to the edge of the handicap parking space. I remember trying to get my mother, who could barely stand, out of the car and into her chair. Even on the best of days, it wasn’t easy. And when someone parks too close, then you can’t roll the wheelchair up, put the chair at an appropriate angle and then get the person out safely.

The other day, I saw it again, a lady trying to push her mother in a wheelchair through a heavy door. Nobody stopped to help. I did because I know that it isn’t easy to manage a heavy door with one hand and try to push a heavy wheelchair through the doorway. So please notice the next time you see someone struggling, stop and ask if they need help. Always ask first. And then respect their answer and provide help if they would like you to help.

And one more thing, don’t forget to always use the brakes on the chair. Not some of the time, all of the time. One day I forgot to and my aunt went rolling down the parking lot incline. She and I had a good laugh about it because we knew she could stop herself, but the man who came running across the parking lot to help didn’t know that and was in a panic. We felt badly that we had scared him. After that, Berda and I set the brakes to protect her and those good people that cared about her safety.

Have a kind and respectful day.

When you are standing alone in the hospital waiting room and don’t know what to do next, you can call me.

I remember when my mom was dying and I was sitting vigil with her in the hospital on the last day of her life. My brother, who I was close to, said to me, “There really ought to be someone who can help people with this.” And what he meant by “this”, it was the dying process. I said to him, “This is what I do, I am a hospice volunteer.” My brother knew me very well and knew that I worked with the dying, but he couldn’t imagine what that meant. And if he couldn’t imagine what a hospice worker does, then a lot of people may be confused or unsure.

But it is not just hospice that people have questions about. There are so many new things to deal with when a loved one is sick. There are specialists who can help you make your home safer for the patient, help you with applying for disability benefits or help you make decisions about both the short and long term plans.

I get called by so many people, whether it is for help during the dying process, help with figuring out what to decide when the patient can’t speak for themselves anymore or how to deal with a conflict in the hospital. You aren’t alone. I can help you when you are standing in the hospital waiting room asking yourself, “Am I doing the right thing? What do I do next?” You can run it by me and I will walk you through it.

Have a kind and respectful day.

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