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.

Are you a victim of the 20 second problem? Does your doctor listen to your whole story or does she interrupt you before you are done?

When the doctor says, “What brought you here today?” Does the doctor listen or does she interrupt as you begin to tell your story? If the doctor interrupts you, you are the victim of the 20 second problem. This is a common problem that has been researched over the years. Now, the doctor isn’t being rude, she is only asking clarifying questions such as: what kind of pain and how much pain and how long have you had this pain? These are important questions, but asking them too soon gets in the way of the doctor hearing the whole story. Once the doctor begins asking her questions, she may forget to come back and listen to the rest of your concerns. Without hearing the whole story, she may misdiagnose or may start heading down the wrong path because she has missed some important details.

Doctors don’t realize that this behavior will lead to the thing they hate that patients do. That is when the patient says the, “Oh by the way” question or the “One more thing doctor” question. This is the last question you ask before the doctor walks out the door. This drives the doctor crazy because they’ve already spent their time with you and are ready to move onto the next patient. But many times, the reason you have the “One more thing doctor” question is, because you weren’t allowed to ask everything at the beginning of the appointment.

So what can you do? Tell the doctor that you won’t ask one more question at the end of the appointment if she’ll take the time to listen to your whole story at the beginning of the appointment. Let her know that it will only take a minute or so for you to explain why you’ve come to the doctor’s office that day. 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 the doctor, but it really works to decrease medical errors, improve medical outcomes and to increase patient satisfaction.

I also recommend that you bring in a prioritized list of questions so the doctor will know what you’re there to talk about. Make sure you mention the most important items first. The doctor doesn’t have forever with you so make it easier for the doctor to help you by being prepared and getting right to the point. You can also print out the sister blog piece under the healthcare professionals category to take to your doctor’s office. It is titled, “Overcoming the 20 second problem or How I learned to save time.”

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.

Part 2 of the interview with Patricia Coonan, “Helping the doctors and nurses avoid lawsuits”

“Are you afraid of getting sued?” for healthcare professionals. Part 2 of the interview with Patricia Coonan, RN on June 25th, 2PM pst. 5PM est. Patricia will be answering more questions about doctor’s documentation strategies. Part 1 can be found at blogtalkradio.com/kindethics on the June 15th scheduled day.

Patricia Coonan will be answering your questions regarding how to protect yourself from a lawsuit. This is a must listen to for doctors and nurses. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics. She will be discussing practical ways to help nurses and doctors stay out of legal trouble by changing your actions and changing how you document.

Patricia been a RN for 24 years and Legal Nurse since 1997. She works for the Beasley Firm as an In-House Consultant and Legal Assistant. If you are being sued, she is the person that would go through the medical records to see what happened and if you have deviated from the Standards, Protocols and Industry Practices and if you may be negligent.

Patricia has also created a training program for those nurses interested in going into the legal field. If you are interested, you can find her products on eBay under Prrn12 or at www.legalnurseprrn12.com or at pc-rn@comcast.net.

You can reach Patricia at Facebook as Patricia Coonan RN, or follow her on Twitter: pcRN.

For legal help, The Beasley Firm website is http://www.beasleyfirm.com and their offices are as follows:
The Beasley Building
1125 Walnut Street
Philadelphia, PA 19107
Phone (215) 592-1000
Fax (215) 592-8360
3000 Atrium Way
Suite 258
Mount Laurel, NJ 08054
Phone (856) 273-6966
Fax (856) 273-6913
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.

Ombudsman Program cut dramatically in California. With these cuts, you need to be more proactive about protecting your loved ones in nursing homes.

I don’t know if you know about a service that is provided free of charge to our nursing home residents. It is something called an ombudsman. (I have used the services of the Ventura County Ombudsman program when my aunt was in a nursing home.) The ombudsman is a specially trained person who protects the resident from being forced to sign something they don’t understand, protects them from elder abuse and protects them when they are receiving sub-standard care. I will be interviewing Molly Davies from the Los Angeles County Ombudsman Program, The WISE & Healthy Aging Long-Term Care Ombudsman Program, in August but I just wanted to let people in the Los Angeles area know about the effects of the budget cuts today. The office is down to 10 people who are protecting the 73,000 nursing home residents in Los Angeles County nursing homes. If you have a loved one in a nursing home in California, you need to be even more diligent about visiting and checking on your loved ones for the rest of this year. Hopefully, next years budget will better but for now, we all have to take on the role of the protector for our loved ones. Here is the statement from the Los Angeles County office.

Long-Term Care Ombudsman Program
Impact of the Governor’s Budget Reduction

The impact of the enacted 49% State budget cut to the local Long-Term Care Ombudsman Program (LTCOP) in California is devastating to the integrity of the services that are delivered and will negatively impact the residents that we serve. The WISE & Healthy Aging Long-Term Care Ombudsman Program is the sole contractor of Ombudsman Services in the City and the County of Los Angeles. The impact to this local program has been the loss of $1,109,783 in funding retroactive to July 1, 2008. In response we have eliminated 22 positions resulting in the reduction of staff from 32 to 10, and we have closed our Lancaster, Downtown LA, Burbank, and San Dimas regional offices. All remaining staff received a reduction in salary.

The following are conservative projected estimates of the reduction of our capability to deliver service to residents in long-term care.

Over 12,000 unannounced visits to nursing homes and board and care or assisted living facilities will not be conducted during this fiscal year, and every year thereafter.

Over 11,500 cases, including allegations of abuse and neglect will not be investigated during this fiscal year, and every year thereafter.

The LTCOP in California has three currently unfunded mandates that include the investigation of elder and dependant adult abuse investigations that occur in long-term care settings; the witnessing of advance health care directives for residents in skilled nursing facilities; and responding to the 24-hour State Ombudsman after-hours crisis line. Although these are unfunded mandates, we have managed to take on these tasks with out further compensation from the State of California, but may not be able to sustain these activities without restoration of our funding.

In the last fiscal year the WISE & Healthy Aging Ombudsman Program responded to 2,086 abuse complaints. Many elder abuse cases are identified during unannounced visits conducted by Ombudsmen, which will decrease proportionally with these enacted budget cuts.

The WISE & Healthy Aging Long-Term Care Ombudsman Program is the largest in the nation providing service to more than 1,816 facilities that have the capacity to care for 73,486 residents. The Ombudsman Program advocates for the rights of residents in long-term care facilities, and for many residents we are the only outside support they receive. The impact of these cuts effectively silences the voices of our most vulnerable constituents, residents in long-term care.

You may want to support the pending legislation AB 394 (Feuer and Jones) Protecting Vulnerable Seniors from Abuse and Neglect by Restoring Ombudsman Funding
AB 392 would use penalties paid by substandard nursing homes to help restore monitoring and advocacy by ombudsman programs. It is fitting that the penalty funds be used to support the ombudsman programs given their critical role in protecting residents’ health and safety.
Current law allows the penalty funds to be appropriated for ombudsman services. AB 392 would require that at least half of the penalty funds be allocated to local ombudsman programs each year in accordance with an existing formula.
Support AB 392 is co-sponsored by CANHR and the following organizations: AARP, Bet Tzedek Legal Services, California Alliance for Retired Americans, California Association of Area Agencies on Aging, California Senior Legislature, California Commission on Aging, Catholic Charities of California, Congress of California Seniors, and Ombudsman & HICAP Services of Northern California. Additionally, it is supported by local ombudsman programs and many other consumer organizations.

You may want to write or call your state senators.

Want More Information?
Use www.leginfo.ca.gov to find contact information for your Senator • and Assembly Member
and to keep track of AB 392’s progress.
• Visit CANHR’s website (www.canhr.org) for updates on all of CANHR’s legislation and to find
out how to become a CANHR Advocate.
• Call CANHR @ (800) 474-1116.

Have a kind and respectful day.

When you can’t understand your doctor’s accent, you may be in trouble.

As our country becomes more and more diverse, the issue of language and communication becomes an ever growing problem in healthcare. There are 329 languages being spoken in America, and with that comes many different accents. If you can’t understand your doctor, you may be in trouble. If you can’t hear the instructions for your surgery, how to take your medications or the information they are telling you about your disease, then how will you be able to get better? This is not about bias, this is about your safety and reality. And I’m not just talking about accents from other countries; it may be accents from different parts of the country. And if you add the increasing hearing loss with our aging population, it only compounds the problem.

So what can you do? If you have a choice, pick a doctor that speaks the same language that you do. The other good thing about picking a doctor who speaks your language and is from the same culture is that when it’s time to make end-of-life decisions, you will probably be in greater agreement. If you truly can’t get a doctor that you can understand, then ask for a professional medical interpreter, even if you are both speaking English. You are entitled by law to have a professional interpreter in a hospital. There is also a medical service that that is free called the A T and T interpreter phone line. You can get an interpreter on the phone and they can help you with your conversation with the doctor.

I was talking to a professional medical interpreter at Children’s Hospital and she was telling me about the different ways one gets into trouble when using the family as the interpreter. She told me that in one language, the words a doctor might say when a patient has died, “I am so sorry your sister has died” don’t translate very well. “I’m sorry” in that language means, “I’m responsible. I killed your sister.” Oops. If you had a professional translator in that situation, the interpreter could have stopped and asked, “Is that what you meant to say?” And of course when the doctor said no, she could then help put the words into terms that would be acceptable. The translator in this instance would say that what should be said is, “I’m so sad. Your sister has died.”

This is just one reason you should be using a professional translator. There are other reasons as well. Your family may not be able to translate some of the terminology because they’re medically illiterate. The language of medicine is complicated. Or they may have an agenda and only translate some of the information to you, the patient. Or they may be following their cultural rules about what can be spoken to their elder. Or there may not be a word for what the doctor is trying to say in your language. Did you know that in one language there is not a separate word for bacteria and virus? There is only one word to describe both. How is your doctor going to explain something when they don’t even have a word for it? Good luck without a professional interpreter.

If you do use an interpreter, make sure you thank the interpreter and respect that they are professionals and are there to help us. Using an interpreter may save your life.

Lastly, your local hospital may want to consider having the interpreters visit the patients throughout the day to make sure their needs are getting met and that they feel like they have a voice in their health care. Your hospital may also think about sending interpreters into the doctor’s offices to provide interpretation services in the outpatient setting. Some hospital systems in Los Angeles have already begun doing this and it is making a difference.

Have a kind and respectful day.

When your patient doesn’t speak English, you may be in more trouble than you realize.

I was talking to a professional medical interpreter at Children’s Hospital and she was telling me about the different ways a healthcare professional can get into trouble when they use the family as the interpreter. She told me that in one language, the words you might say when a patient has died, “I am so sorry your sister has died” don’t translate very well. “I’m sorry” in that language means, “I’m responsible. I killed your sister.” Oops. If you had used a professional translator in that situation, they could have stopped and asked you, “Is that what you meant to say?” And of course when you said no, you could then ask for their help in putting the words into terms that would be acceptable. The translator in this instance will tell you that you should say, “I’m so sad. Your sister has died.”

This is just one reason you should be using a professional translator. There are other reasons as well. The family may not be able to translate some of the terminology because they’re medically illiterate. Or they may have an agenda and only translate some of the information to the patient. Or they may be following their cultural rules about what can be spoken to an elder. Or there may not be a word for what you are trying to say in their language. Did you know that in one language there is not a separate word for bacteria and virus? There is only one word to describe both. How are you going to explain something when they don’t even have a word for it? Good luck without a professional interpreter.

Here are a couple tips to make working with a medical interpreter more effective:

1. If you can, arrive a few minutes early to speak with the interpreter and let them know the types of things you’ll be discussing. This way they can give you insight into the linguistic and cultural rules and how they might affect the interaction.
2. Try to not talk for more than one to two minutes. The interpreter is having to remember everything you say, and then has to translate it into culturally appropriate language. Allow the interpreter thought time.
3. Once the interpreter begins translating. Do not interrupt. Patients may think that you don’t trust the interpreter if you interrupt and the interpreter will lose face. I know this takes patience.
4. The other thing that takes patience is understanding that language doesn’t translate word for word. The English language is very direct and we are allowed to say what we need to without dancing around the subject. In other languages, language is in indirect. The only way you can say the same information is to approach it from different angles until you can finally land on the information. This will automatically take longer. It is not the fault of the interpreter if they have to say a lot to say what you have said in a few words. It is the fault of the structure of language.
5. The interpreter can also provide input on how to talk about delicate issues. We are so used to talking about body parts, diseases and personal matters that we forget how embarrassing it can be in other cultures.
6. If there isn’t an interpreter available, please use the A T and T interpreter phone line.
7. Make sure you thank the interpreter and respect that they are professionals and are there to help us, as well as the patients. They can really save you from making a terrible mistake and harming the physician/patient relationship.

Lastly, your hospital may want to consider having the interpreters round on the patients throughout the day to make sure their needs are getting met and that they feel like they have a voice in their health care. Your hospital may also think about sending interpreters into the doctor’s offices to provide interpretation services in the outpatient setting. Some hospital systems in Los Angeles have already begun doing this and it is making a difference.

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.

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