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.

Your Patients May Not Know How To Get The Help They Need.

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.

We can’t assume that our patients know how to get what they need. They may not even know what they need. They don’t know that there are specialists who can help them make their home safer for the patient, help them with applying for disability benefits or help them make decisions about both the short and long term plans. As professionals, you need to help them access the appropriate resources. If as a physician you don’t have the time, then make a referral to a social worker who can help the family cope with their changing life and health situation. Or find out what resources are available in your community and help them make the connections yourself.

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 wondering, “Am I on the right track here? Am I doing the right thing?” You can run it by me and I will talk you through it.

Have a kind and respectful day.

Most people on their death bed will ask, “Did I matter?” Here is a dying ritual to help you with this question.

One of the universal questions that people ask themselves when they are dying is, “Did I matter.” It doesn’t matter what religion you are or if you have no religion, we all hope that our life has made a difference. Whether you are interacting with your loved one or if you are a healthcare professional caring for a patient, this is something that you can help the dying with. Let them know directly how they have made a difference in your life. Tell them if you have learned something from them, if they have made you laugh or if they taught you how to be a better person. The person will have a more peaceful death knowing that their life had a positive effect on this world.

A wonderful ritual you can do with the dying is the rock ceremony. Even if the person is unconscious, you can still do this ritual. Here is how it works. Each person who cares about the dying person gets a rock. Any rock. It can be a special rock they pick out or just a rock from the garden. One by one, each person walks into the bedroom or hospital room of the patient and lays the rock on the person’s chest or lap. As they do this, they should say, “This rock represents what you have taught me, done for me, helped me with… You have made a difference in my life. Thank you.” Or words like that. You will know what to say. Young children can do this ritual as well. They might just say, “I like it when you read to me or take me to get ice cream.” It doesn’t matter how small or big, just that the person matters. As each person places the rock on the patient, the patient can literally feel the weight of their effect on the world. It is a powerful way to say thank you and goodbye. I hope that on the day you die, you will know that you have mattered too.

Have a kind and respectful day.

“How do I know it is time for hospice? – Information for doctors and their patients” with Dr. Christian Sinclair, on May 29th, 2PM pst

Dr. Christian Sinclair, “How do I know it is time for hospice? – Information for doctors and their patients. on May 29th, 2PM pst”

Dr. Christian Sinclair is a palliative care expert and is the co-editor of the Pallimed: A Hospice & Palliative Medicine Blog. http://www.pallimed.org/     Dr. Sinclair is the Associate Medical Director of the Kansas City Hospice and Palliative Care. www.kansascityhospice.org He is also on the Board of Directors of the American Academy of Hospice and Paliative Medicine.   www.aahpm.org

You can also contact Dr. Sinclair on Twitter: @ctsinclair

About Me (Christian Sinclair)

My medical training started at the University of California, San Diego, which I completed in 2000. From there my wife, Kelly, our dog and I went to North Carolina for 4 years for my Internal Medicine residency at Wake Forest. My 4th year was spent doing a palliative medicine fellowship at the Hospice and Palliative Care Center. I now have been working since the summer of 2004 at Kansas City Hospice & Palliative Care as a associate medical director. I was also the fellowship program director for the KC Hospice Palliative Care fellowship from 2006-8. I am a big advocate for palliative medicine fellows, and have been the chair of the AAHPM professionals-in-training special interest group (PIT-SIG). I was elected to the AAHPM Board of Directors in 2009.   www.aahpm.org

Bo Bradley on Thursday, May 28th at 3:30 pst on blogtalkradio.com/kindethics about “Preventing Caregiver Burnout.”

I will be interviewing Bo Bradley on Thursday, May 28th at 3:30 pst on blogtalkradio.com/kindethics about “Preventing Caregiver Burnout.” She will discuss what is burnout and what leads to it, then she will give you tools and strategies to manage the burnout. To find out more about Bo, check out her website at http://www.UniversityOfManifesting.com

Are you the patient’s advocate or a bully?

This might be painful to read, but you may be making things worse for your loved one. Now I am a big believer in advocating for what you need in healthcare but there is a line which shouldn’t be crossed. And the line is when you start bullying the members of the healthcare team. Here is what this might look like. The doctor says, “What you are requesting won’t work for this condition. That treatment isn’t an option.” And you say, “You have to do it anyway or I will sue you.” You will probably get your way because doctors are afraid of the “l” word, lawsuit. But what you really just got is a medical treatment that will not work for your loved one and will only give them toxic side effects. Are you sure that’s what you meant to do?

If you truly want to know if a treatment is appropriate, ask for a second or third opinion. If you can find a doctor that will give you what you want, then change to that doctor. But if after you have asked 2 or 3 other doctors and they all tell you no, then you need to realize what you are getting is good medical advice. If everyone around you reacts negatively to you, it is not everyone being the problem, it is you. So if all the doctors and nurses are a “problem”, then perhaps the problem is you. You may be a bully.

You may think that if you become loud and demanding then you will get what you want. It doesn’t work that way in hospitals. You may get what you want but you will destroy the relationship between the patient and the doctor. And did you know that if the patient trusts the doctor, they will actually heal faster? It’s true. So when you damage the relationship, you are damaging the recovery process. And again, your good intentions will cause harm.

The doctors and nurses will start avoiding the patient’s room and spend less time interacting with you and the patient. And you and your loved one will become known as the “problem in room 321.” Every nurse that comes on shift will be warned about you. And again, that doesn’t get you what you want.

If you want to get more, be kinder and more appreciative. I always tell people that if you want to get better care, bring snacks to the nurses. Say thank you to the doctor. Make them want to spend more time thinking about your loved ones health and more time talking to you and the patient. Be a part of the healthcare solution.

Have a kind and respectful day.

When the patient or family member is a bully?

I don’t have to tell you when a patient or their family member is bullying, you know. Nobody says the word “bully”, but that is what is going on. People bully the doctor to get what they want because they are desperate, afraid, guilty or any number of emotions. They want you to save their loved one so they can resolve their issues with the person. Maybe they haven’t been a good daughter or haven’t said sorry, so they try to make you do something you can’t do. Save their loved one. So what can be done?

The first thing to know is that you have something called professional integrity. And this is not a small thing. It is one of the four state and federal interests. The four interests of the government are:
1. To protect people from death
2. To protect people from suicide
3. To protect vulnerable populations
4. To protect the integrity of medicine

Of all the things the government could have wanted to protect, they chose you, the healthcare professional. They understand that what you do is special and you need to be able to exercise your medical integrity and not have to give in to patients demanding treatments that aren’t good for them and will not work. Even the AMA supports you in this. They state that you don’t have to give a patient a particular treatment just because they demand it. It still has to be “good medicine.”

So what can you do when you find yourself up against a bully? Stop the bullying the minute it starts. Every time you give in to their demands, they get more powerful and they think they can get away with it. You need to be firm and state, “I won’t give your loved ones treatments that will not work. I will not subject them to the toxic side effects without the chance of any benefit.” And you have to say it with courage and strength. You don’t have to be hostile, just confident.

The next thing you can do is to make sure you offer something else instead. Most of the time when we say no to a patient, we don’t give them another choice, we just say no. When you are going to say no, then be sure you have a number of other things you are going to offer. Even if it is as simple as improving their pain management, putting them on hospice, getting the social worker to contact their religious leader or … Every time you give up your authority, you are changing the standard of care. If all of the doctors keep giving it up to bullies, then the standard of care will be that bullies get to dictate medical care. A famous bioethicist, Larry Schneiderman says, “Use it or lose it.” Right now you have the right to say to bad medical treatment demands, but you must exercise that right in order to keep it.

Have a kind and respectful day.

Discrimination at the End of Life for the Mentally Disabled. It is not what you think!

The people we are supposed to be protecting are not being allowed a peaceful, dignified and good death. There is substantial discrimination for those who are mentally disabled at the end of life. Wait a minute you say. Aren’t there laws that protect people who are disabled? Yes, but the laws and regulations can be a double edged sword and may end up actually harming the patient. Here is what happens.

A patient has been mentally disabled for their entire life. They have a family member who is their conservator and are part of their local Regional Center. So there are protections already in place. These protections have worked well during their lifetime but may cause them problems when it comes time to die. What happens is that because the patient can not say, “Enough already, I am ready to die”, they continue to have their dying/suffering prolonged. The doctors hesitate to do what they would do for a “regular” patient because they don’t want to get in trouble. If you or I wanted to stop receiving aggressive treatments, we could say stop and the doctors would have to listen. But because there are so many legal protections in place mandating the treatment of the disabled, even when the family wants to stop, it is difficult to stop treating the patient. And if the patient does not have a strong advocate, then the healthcare professional will err on the side of life and keep prolonging their dying process. This is why having a strong advocate in place may make a difference. The advocate can ask for the patient to be allowed the peaceful death offered to other patients.

An example of this is seen in the last days of the dying process. When people near the end of their life, they stop eating as their body is no longer able to digest and use the food. If you feed a dying person near the very end, you can increase their pain and suffering. For most of us when we are dying, we will refuse food and people will let us stop eating. Now it may be difficult for our loved ones to accept that we are no longer interested in eating, as food often represents love, but we should respect the patient’s wishes because we don’t want to increase their pain and suffering. For the mentally disabled patient there are laws which state they must always be offered food orally. So we feed the dying disabled person even though we would never treat a “normal” person that way as it would increase their pain as they are dying. This is what it comes down to. We treat the dying mentally disabled differently than a regular patient. And this can significantly change their dying experience. The laws which protected them throughout their life may harm them when they are trying to die a peaceful death. At the end of their life, we shouldn’t treat the disabled person as “special” but instead we should treat them as “normal.” That way we can ensure they get the good death they deserve.

Have a kind and respectful day.

Suzanne Holman on Thursday, May 21st, at 10pst on blogtalkradio.com/kindethics “Keeping sane, healthy and professional when your parent has alzheimers.”

I will be interviewing Suzanne Holman on Thursday, May 21st, at 10pst on blogtalkradio.com/kindethics “Keeping sane, healthy and professional when your parent has Alzheimers.” She will be discussing how to be more productive at work while you are caring for your loved one with Alzheimers.

Suzanne Holman of Suzanne Holman International is the founder of the Alzheimer’s in the Family Coaching Program. She created this program to support business women who have a parent with Alzheimer’s to stay sane, healthy, and professional.
Suzanne has a background in nutrition, fitness, psychology, technology, and emotional intelligence. She has also had the life experience of a mother diagnosed with Alzheimer’s three years ago. You can access her blog and website at www.AlzheimersintheFamily.com

Suzanne Holman International is a coaching and training company committed to supporting women worldwide in creating a life that has the elements that are important to them. In our Alzheimer’s in the Family program we support businesswomen who have a parent with Alzheimer’s to stay sane, healthy, and professional. We offer specific strategies to support you during all phases of your parent’s Alzheimer’s journey. Programs we offer are a free Gathering Call each month, small group coaching, and teleseminar programs.

Amal Burhan on Monday, May 18pst, at 5:30pst on blogtalkradio.com/kindethics “Helping Healthcare Professional Understand the Needs of the Muslim Patient.”

I will be interviewing Amal Burhan on Monday, May 18pst, at 5:30pst on blogtalkradio.com/kindethics “Helping Healthcare Professional Understand the Needs of the Muslim Patient.”

Amal Burhan will be discussing the needs of the Muslim patient receiving treatments during their life and during their dying process.

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