“Changing your Nursing Home Culture and Environment.” Part 2 of Interview with Frances Shani Parker, author of “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” on July 31st, 12pm PST.

Changing your Nursing Home Culture and Environment.” Part 2 of Interview with Frances Shani Parker, author of “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” on July 31st, 12pm PST.

Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics. To listen to Part 1: http://tinyurl.com/rdsf58

An award-winning writer, consultant, and former school principal, Frances shares insights and experiences about her years of hospice volunteering in Detroit nursing homes. Using stories, poems, and general information, she has written a groundbreaking book that is an inclusive and literal guide for becoming dead the right way. Topics include hospice, caregiving, dementia, death, bereavement, and strategies for improving eldercare and nursing homes. While universal perspectives are presented, the often missing views of people of color and residents in urban nursing homes are examined.

Frances’ background as an educator and her upbringing in New Orleans, LA add interesting layers to her problem solving in nursing homes and to her descriptive storytelling. She uses her writing and public speaking skills to advocate for senior citizens and promote conversations empowering others to have dignified death journeys. Her favorite anonymous quote is “If you think one person can’t make a difference, you haven’t been to bed with a mosquito.” Visit Frances in cyberspace at www.francesshaniparker.com and at her blog titled “Hospice and Nursing Homes http://hospiceandnursinghomes.blogspot.com

Video Poem: Reflections of a Hospice Volunteer (Hospice, Nursing Homes, Eldercare) 3:25 mins.

http://www.youtube.com/watch?v=LeBl5QtlPxg

Video Poem: “Pieces of Our Minds” (Dementia, Alzheimer’s Disease, Hospice, Nursing Homes) 2:24 mins.

http://www.youtube.com/watch?v=LgRoKDUEOUk

(Search under FrancesShaniParker on youtube.com.)

Have a kind and respectful day.

When you hear the words, “There is nothing more we can do.”

As a patient, there may come a time where you hear the words, “I’m sorry, there’s nothing more we can do.” I want to apologize for the doctor’s abrupt words. Many doctors have had little training in having these types of conversations and are incredibly uncomfortable. What your doctor should really be saying is, “Even though there is nothing more we can do to cure you, there’s lots more I can do. I can do plenty to keep you or your loved one comfortable, out of pain, minimize your suffering, refer them to hospice, get your religious leader in here to pray and help provide a peaceful and dignified death.” Just because you don’t hear this doesn’t mean you shouldn’t ask for this. You should advocate that the doctor makes sure you get what you need as your disease progresses and as you die. Help the doctor help you by asking for a palliative care referral if you are having problems with pain. Ask for a referral to hospice when the patient is sleeping more and eating less. You want to stay connected to the doctor even if the direction of treatment has turned to comfort and care.

As a patient or a loved one, you will have a strong grief reaction to these words. You may be in denial, in disbelief, in numbness or feel some other strong emotions. If you are in denial, you will not believe that what you were just told is true. This is okay as it is the way your brain protects you from bad news. Eventually, you will hopefully come out of denial so you can use your remaining days wisely. Or you may find yourself in disbelief. Disbelief is where you keep saying to yourself, “I know the doctor just said ______ but I can’t believe it’s true.” In this situation, you may want 2nd opinions or repeated tests. This is disbelief. Your brain knows it’s true but it is not ready to accept this news. This is also okay and normal. Or you may be numb. This can really be a problem when the doctors want you to make decisions. Ask for a few days so you can process what you have been told before you make these final decisions. You may also have many other types of emotions: anger, fear, hopelessness, helplessness, sadness, etc. These are also normal as you come to terms with your life’s expiration date.

You get to choose how you want to spend your remaining days, months or years. Choose carefully as you won’t get these days back. And if you are like someone I knew who was waiting until they got closer to death to write love letters to his children and his wife, realize that sometimes when get closer to death, you may not have the energy or strength left to finish your goals. Please use your time wisely.

Have a kind and respectful day.

When you have to say, “There is nothing more we can do”, there’s a better way to do it.

Unfortunately, there comes a time in a patient’s life where you have to say to the patient or their family, “I’m sorry, there’s nothing more we can do.” This is the wrong thing to say and let me explain why. I know what you’re trying to say is, “there is nothing more we can do to cure your disease” but what the patient or loved one hears is, “I’m giving up and walking out this door and never coming back.” I know that’s irrational and that’s not what you meant to say but unfortunately these words sound like abandonment to the patient or family.

I believe it’s important to tell the truth about prognosis (if the patient wants to hear it), even if you can’t give them an exact time give them an estimate. You can say days to weeks, weeks to months, months to years. People deserve the opportunity and time to clean up their lives. So, when you have to say that there really is nothing more you can do, you may be missing a really important piece to this conversation. Here is how to solve this. Go ahead and tell them that there’s nothing more you can do to cure the disease, and then continue on and say, “But there’s lots more I can do. I can do plenty to keep your loved one comfortable, out of pain, minimize their suffering, refer them to hospice, get your religious leader in here to pray and help provide a peaceful and dignified death.” Helping someone to have a pain-free and dignified death is substantial. I don’t know if you realize this but palliative care specialists have the highest satisfaction rate of all medical specialties. And why is this? It’s because this is profound and meaningful work. You really matter to the patient and the family on those last days of life. It is wonderful if you can say to the patient that you’re going to walk on this journey with them no matter where it takes you. Then they won’t feel abandoned and alone. You will still be the healer, but now the focus of your healing is to heal suffering, not the disease.

The other reason this technique works is because whenever you have to say no to a patient, it is always important to offer them something else in exchange. I don’t know if you’ve had this experience with young children when trying to take a breakable item out of their hands. A smart parent grabs their favorite toy and exchanges it with them or distracts them toward something else. The same thing can happen in medicine. If you have to say no to a patient then offer something that you can say yes to. Even if all it is good pain management or the hope for a peaceful death.

Have a kind and respectful day.

Moral Distress Part 2. When patients make bad decisions.

In the first part, we looked at one type of nurse’s moral distress. We focused on the stress we feel when we witness things that we know are wrong but feel helpless to do anything about it. Or perhaps we have tried to do something but nobody will listen. Today I want to talk about a different kind of moral distress.

This distress is also felt by healthcare professional but it is different because you can’t do anything about it. This moral distress is when a patient is making a decision that you don’t agree with. Patients are allowed, by law, to make their own decisions, including the decision to stop or refuse treatments even when they know they will die because of this decision. Patients have the right to do this because it is their body, not ours. We have to accept it as healthcare professionals but that doesn’t mean that we have to like it. These kinds of situations create terrible moral distress. Imagine having to stand by and watch someone die, when you know there is something you could do to stop it. You would feel helpless and frustrated and angry. These are normal reactions and this is what our healthcare professionals feel when they have to watch us make bad decisions.

If you are the patient, you need to understand that when you show up at the doctor’s office or at the hospital, the doctors and nurses think you are there because you want them to do something for you. Makes sense. But when you show up and then refuse what they have to offer, they will feel helpless and frustrated with you. You are entitled to make your own decisions but please understand that you are making it harder on the healthcare team. They are caring human beings. In no way am I saying you have to do the treatments because of their moral distress, just understand that the people taking care of you will feel the distress. Ultimately, the healthcare professional will have to find a way to live with themselves when you leave their office or after you die.

If you are the healthcare professional in this situation, one way you can manage your distress is to ask the patient more questions about why they are choosing what they are choosing. When you find out their story, you may be surprised by what you hear. Many times I have found myself agreeing with the patient’s decision after I hear the why. Yes, I wouldn’t make the same decision for myself, but it makes sense for them based on their values and beliefs. You can ask the patient if they are willing to reconsider but do not ask them to try to force them to change their mind. They do not have to justify themselves to you. If they don’t want to talk about it or reconsider, please respect this decision. Another technique I use in this situation is I ask them why they are saying no, in a non-threatening or demanding manner. When I do, I may discover that they have some misunderstanding about the treatment, the situation or the side effects. In having a compassionate discussion, oftentimes I can discover what is really worrying them and help them reconsider.

The last way I can offer for you to make peace with this kind of moral distress is to think about it as if you were the patient. Wouldn’t you want the choice and the right to make your own medical decisions? Would you want me to try to impose my values on you even though we might not be from the same culture or religion? You would want me to respect you. And I would. People have the right to make the wrong decisions. (except in pediatrics) This is the gift and the curse of autonomy. I am not saying it will be easy. Coping with this type of moral distress is our special obligation as healthcare professionals.

Part 1 https://kindethics.com/2009/06/nurses-moral-distress/
Have a kind and respectful day.

“Saving you Money on your Prescription Medications.” Interview with MrMedsaver, Jacob Milbradt, PharmD on July 23rd, 10AM pacific.

Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

If you’re struggling to afford your medication, MrMedSaver.com can help. On average, we’re able to show our clients how to save about 70% on their prescriptions. Here’s what R. Michael Dowden from Farmersville, OH, a recent MrMedSaver.com client, said about his Rx Savings Report:
“I can see already, the biggest benefit is putting information into the hands of the consumer. On some of these, I thought I already had the answers to what was the lowest cost and still effective medicine. Now I have alternatives that I can discuss with my doctor(s).”
Imagine if your mechanic selected which car you would purchase. Not having a firm grasp of fluctuating automobile prices, imagine if he chose your new vehicle without even taking cost into consideration. Instead, what if he based his decision solely on performance, looks, and amenities, and chose a brand new Mercedes? Would you stand for this? Of course not . . . that would be preposterous. Yet this scenario is the norm for the pharmaceutical industry.
Usually, the person who selects your medications (your doctor) has no idea what you’ll have to pay for them. The pharmaceutical industry changes at such a rapid pace that doctors simply can’t keep track of drug prices or developments like new generic availability. In fact, one of the key sources of drug information for doctors is drug company sales reps. These salesmen are highly trained at pushing doctors away from cost-effective generic medications, and toward the expensive brand-name drugs they are promoting. The design of the entire pharmaceutical industry is flawed, forcing you to pay much more than needed for your medications . . . and there’s no one to look out for you.
Now, with the help of Mr. MedSaver, that’s all about to change. Our company specializes in providing an independent assessment of your medication costs, ending with a report demonstrating numerous tactics you can employ to drastically reduce the amount you spend on prescription drugs. Think of us as the Kelley Blue Book for the pharmaceutical industry.
Mr. MedSaver was founded by Jacob Milbradt, PharmD, a pharmacist from Kansas who grew sick and tired of seeing his patients pay too much for their prescriptions. After daily encounters with people who couldn’t afford their prescriptions or who had to make difficult decisions, such as groceries vs. medication, Dr. Milbradt knew he had to do something that would make a real difference. After a large amount of research, he developed Prescription Cost Management—a revolutionary series of techniques that can be used to cut prescription drug costs to a mere fraction of what most people pay.
Now, these techniques have been taken to the next level—Personalized Prescription Cost Management. At Mr. MedSaver, we don’t have inflexible computer programs with “one-size-fits-all” recommendations. Instead we’ll provide you with a detailed analysis of your medications that is personally completed by a pharmacist and is 100% customized to exactly fit your unique needs.
We know how difficult it can be to afford your medications. We also realize how it often seems that there’s no one available to offer any real help. Well, not anymore. At Mr. MedSaver.com, we offer real results. Guaranteed. And remember, you can trust Mr. MedSaver for completely unbiased advice:
• We aren’t an internet pharmacy: The sole motivation of internet pharmacies is to make as much money as possible by profiting off your prescriptions. Because of this, saving you money isn’t a high priority for these companies.
• We don’t offer prescription “discount” cards: Prescription “discount” cards seldom actually offer much of a discount. In fact, most companies actually turn around and sell the data they collect whenever you fill your prescriptions!
• We will NEVER charge you to enroll in a FREE assistance program: Most websites that offer to enroll you in patient assistance programs won’t tell you that these programs are ENTIRELY FREE. Furthermore, these companies aren’t truly interested in saving you as much money as possible. Instead, they focus on continually milking your wallet every month with enrollment fees.
• We aren’t employed by your pharmacy: We don’t work for your pharmacy, and as a result our first allegiance is to you—NOT the company that sells you prescriptions.
• We are 100% independent: The big drug companies hate us, but you’re going to love us. That’s because we tell it exactly how it is. We have no financial ties to any pharmaceutical manufacturers. Also, we’ll never try to steer you toward pharmacies that have paid us to do this.

Have a kind and respectful day.

Be careful about going to the hospital in July – It could be dangerous to your health

I was talking to legal nurse expert, Patricia Coonan, and she was telling me that there is a definite increase in medical errors in July. I have heard this joked about in the world of medicine, but it is not a joke. Errors increase every year at this time because this is when doctors in training shift to a new level of responsibility. The newly graduated doctor becomes an intern, the intern becomes a resident and the resident becomes a fellow. With this increase in responsibilities practically overnight, the doctor needs to be ever more vigilant about asking for help when they get into an overwhelming situation. It is normal for them to need help occasionally and they need to speak up at those times. Patricia says that medical negligence is usually not because the patient has the negative side effect, but is when the doctors or nurses don’t notice and fix the problem. Medical errors are normal because humans are taking care of us. And the younger doctors are still learning.

I am not telling you this to scare you but to make sure you are educated. You should always have a patient advocate at the hospital with you. You should ask what medicine is being given to you and what dose you are getting. If it is not on your list of medicines, ask why you are getting this new drug. You should make sure people are washing their hands before they touch you. You should make sure you have all of your questions answered before you sign a consent form. If you can, ask questions and make sure you are getting a consistent message from your doctors. If you are too ill to watch out for yourself, then get a love one to protect you and ask questions.

The only way you get new doctors is to train them. And they get trained by learning on all of us. These are real doctors and they have been well trained. I have had all of these levels of doctors take care of me when I was in the hospital and I was just fine. So, I am not saying you should be afraid of interns, residents or fellows. This is just a reminder to be your own patient advocate.

My dad would say that, “Dying is difficult because we have never done it before.” But we don’t need to be afraid because our bodies know how to die.

My dad would have told you that, “Dying is difficult because we have never done it before.” But we don’t need to be afraid because our bodies know how to die.

A few hours before my dad died, a couple of his friends stopped by to say their goodbyes. His friend Mary asked me, “What do you think your dad would be saying right now?” I said, “He would probably say that dying is difficult, because we haven’t done it before.” The reason I told her this was because he used to say the same thing about aging. “Getting older is difficult because we haven’t done it before.” How true both of these statements are because anything that is unknown to us can be scary. If we had done it before, we would know that it isn’t as bad as we thought it might be. We might realize that there can be profound lessons in aging and in dying. We might be at more peace during the dying process because we would know that our bodies know how to die. What do I mean by this? The act of dying is sometimes referred to as the labor of death. It is actually rather similar to the labor of birth, though hopefully a lot less painful. Let me explain.

When you were about to be born, your mother didn’t have to say to her uterus, “Please contract now and began to push the baby out.” Or, “Cervix, please dilate so the baby can come out.” Your mother’s body knew what to do and the labor of birth happened naturally. The labor of death is similar to the labor of birth because your body knows what to do. As you begin to near the end of your life you may begin to sleep more and to become less interested in the world around you. You may not have the strength to the things you used to do. As death gets nearer, you will begin to sleep even more and to eat even less. You’re just not hungry anymore and that is normal and all right. Your body knows that it’s time to shut down and that it doesn’t need extra food to keep it going.

Your body goes through predictable and peaceful changes as death approaches. Your skin will get cooler and your breathing patterns will change back and forth from fast to slow to barely there. You may get a fever. There are many other symptoms that you might also experience. You probably won’t be communicating at all at this point. But you can still hear and feel your family. Your loved ones should still talk to you as if you are there and hold your hand, give you a massage or climb into bed to embrace you. If you would like music to be played, then play their favorite songs.
They should do whatever they think you might like to comfort and support you.

It’s great if you have a hospice team in place to support you through this process. They can educate both you and your loved ones about what to expect at each stage along the way. Not everybody dies the same way but there are predictable patterns about what to expect. You don’t need to be afraid. You knew how to be born and you know how to die.

There is more information available on the Hospice Foundation of America website at www.hospicefoundation.org

Have a kind and respectful day.

Addendum: Comment from Thaddeus Pope. HR 2705 bill before the House of Representative is unnecessary and may be dangerous when it comes to Advance Healthcare Directives.

**Addendum added on June 29, 2009. Thank you Thaddeus Pope, from medicalfutility.blogspot.com. He reminded me that the part of the advance directive that states “who” should be the decision maker may not be a problem for the doctor if it is written by a lawyer. The “what you want” section is the part we should be worried about. Thanks, Thaddeus.

The HR 2705 bill before the House of Representative would give a tax break to someone using a lawyer to complete their advance directive. While at first glance, I love it that the government is considering ways to make sure people have advance directives but there is a hidden danger. The danger is that doctors hate it when people have advance directives written by lawyers. The documents tend to be long and difficult to understand. When you are in the emergency room, you want to have a standard form that the doctors can read quickly and put to use. Not only will the lawyer’s advance directive annoy and confuse the doctor, it may not be read until much later after your life and death decisions were made without your input. That is not what you want. The whole point to the advance directive process is to make sure your voice is heard when it needs to be. What doctors would prefer is for you to use the standard forms found in your state. (see my resource page for one for your state)

Also, you should never have to pay anything for an advance directive. You can get a free one online or get one at the admitting desk of your hospital. Then you can have it signed by witnesses and you don’t need a notary. Just make sure the people witnessing follow the instructions on the form. Usually the witness can not be someone you are assigning to make your decisions for you or somebody in your will. Make sure you read your form carefully.

Please tell your representative to not vote for this bill. Nothing against lawyers. I believe that are definitely times that we should use lawyers. But this is not one of them.

Have a kind and respectful day.

“The Advanced Planning and Compassionate Care Act of 2009” Interview with Richard Handy from the WeCareHospice.com on July 29st, 10AM pacific, on blogtalkradio.com/kindethics

“The Advanced Planning and Compassionate Care Act of 2009” Interview with Richard Handy from the WeCareHospice.com on July 29st, 10AM pacific. Call in to listen live at (347) 945-5152 or listen online at blogtalkradio.com/kindethics.

Find out more and then contact your United States Senator.

Here is a sample letter that Richard Handy provides with the necessary information:

I read with great interest “The Advanced Planning and Compassionate Care Act of 2009”, and while I feel it is an excellent piece of legislation, I also think there is one more item that should be considered.

As I am sure you are aware, for hospice agencies, Medicare has a cost containment strategy often referred to as the 80/20 Rule. According to this regulation, hospice patients must receive 80% of their care at home and no more than 20% at an inpatient hospice facility.

In general, any hospice patient whose care is so complex or demanding that the family can no longer continue to provide home care has two choices. The most expensive option is to go to the hospital emergency room and receive treatment and in most cases be admitted. This often involves very expensive time in the hospital’s ICU.

For example, if a hospice patient, diagnosed with COPD with major complications and co-morbidities is admitted to Singing River Hospital in Jackson County, MS, he will spend and average of 9.45 days with an average final charge of $43,222. This is fairly typical for other hospice diagnoses, CHF,CAD, HIV, ALZ, ALS, CVA, etc.

(2)
An option that achieves a positive outcome for the patient and is more economical is short term placement in an Inpatient Hospice Facility. Patients admitted for inpatient care are reviewed by the interdisciplinary team weekly. Therefore, an estimated average stay would be 14 21 days at an average daily rate of $542.50 or a total charge of $7395 to 11,392.50. This represents a significant savings of between $31,829 to 35,627. This savings is representative of a single exacerbation of the illness. Most patients repeat this process several times during the course of their illness.

Some of the patients inpatient hospice provides care for are those with:
• Bleeding—active or potential
• Sepsis
• Seizures
• Uncontrolled pain
• Any uncontrolled symptoms
• Imminent death under specific conditions
• Acute cardiac symptoms—myocardial infarction, arrhythmias

The primary difference between Inpatient Hospice and the Hospital is the skilled nursing and medical management of the patient. In hospice, the focus is on palliation of symptoms, with attention given to the family, and the psychosocial and spiritual support is provided that is so badly needed.

However, because of the Medicare 80/20 Rule, Most hospice agencies that provide inpatient care face the danger of excessive financial risk if they continue to provide care to all of the patients that require this type of service. These are patients without family support, some with very complicated needs, who require extended inpatient hospice stays, some with complicated morbidity and some who live in an environment that make it difficult to provide services.

(3)
I am asking you to help us help them by amending “The Advanced Planning and Compassionate Care Act of 2009” to include amending Title XVIII of the Social Security Act to remove the 20 percent inpatient limitation under the Medicare Program on the proportional hospice care certain hospice programs may provide. This would free agencies to accept all of the patients referred to their facilities without worrying about financial risk.

If you have any questions or would like to discuss how we can improve patient outcomes while reducing costs, please do not hesitate to call, 228-474-2030 (office) 228-990-5281 (cell) or email: rfhandy@wecarehospice.com

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.

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