Viki will be presenting with POLST Coalition in L.A. on 10/28/10

The Coalition for Compassionate Care of California is a statewide partnership of more than 95 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California. Their mission is to promote high-quality, compassionate end-of-life care for all Californians.

POLST (Physician Orders for Life-Sustaining Treatment) is a form that states what kind of medical treatment patients want toward the end of their lives. Printed on bright pink paper, and signed by both a doctor and patient, POLST helps give seriously ill patients more control over their end-of-life care.

Membership is open to any organization or individual that wants to support high-quality, compassionate end-of-life care for all Californians.
Membership Benefits include:
* Connection to a statewide, multi-disciplinary effort to ensure quality end-of-life care
* Access to cutting-edge ideas, tools and resources
* Timely legislative updates
* Networking at the annual CCCC membership conference
* CCCC’s monthly email newsletter
* Listing as a member on the CCCC website
* Discounted registration fees for selected CCCC programs, events and materials
* Being part of a larger public policy voice to impact end-of-life issues

Have a kind and respectful day.

Leeza’s Place will be hosting an End of Life presentation on 7/29/10 from 6-7:30pm PST

Viki will be giving an End of Life presentation at Leeza’s Place in Sherman Oaks, CA on 7/29/10 from 6-7:30pm PST

Leeza Gibbons develped Leeza’s Place for both family caregivers and the recently diagnosed with chronic illness or disease, that integrates educational programs, connective social activities, emotional support, and intergenerational programming designed to help you navigate through your community’s continuum of care.

Leeza’s Place was designed to ensure that others would have access to new, supportive settings created for the purpose of educating, empowering and energizing.

The cornerstone of each Leeza’s Place is a specially trained “Leeza Care Advocate” whose primary responsibility is to guide caregivers and their loved ones through the emotionally charged maze of memory disorders: educationally, supportively, and confidently.

Each Leeza’s Place has been carefully crafted to empower both the caregiver and the recently diagnosed by offering services that create self esteem, relieve symptoms, impart knowledge, reduce stress, promote inclusion, and ultimately improve the quality of life while helping you to acquire advocacy, coping and care-related skills.

All of the programs at Leeza’s Place are the direct result of listening to and understanding the unique needs, values, pressures and goals of caregivers and their loved ones. Programs have been designed to provide educational and empowering strategies that are not currently available.

Although services may vary from site to site, each Leeza’s Place locale will provide programs that offer support on three levels – emotional, educational and social – for caregivers, families and their recently diagnosed loved ones.

Leeza’s Place is the signature program of the Leeza Gibbons Memory Foundation. For a list of Leeza’s Place locations across the country, please click HERE.

Have a kind and respectful day.

Join Viki as she talks about “Empowering Caregivers to Make Better End-of-Life Decisions” at Circle of Care Leeza’s Place, June 16th in Sherman Oaks.

Empowering Caregiver’s to Make Better End-of-Life Decisions at Circle of Care – Leeza’s Place on June 16 from 12-1:30.
Everyone is welcome!

Being empowered and educated about the dying process brings peace of mind knowing that you will be able to handle what may come your way. Attendees will learn about the needs of the dying, how to make good end-of-life decisions and hospice services can benefit your entire family. Viki Kind joins with Circle of Care Leeza’s Place to create a safe haven ot ask yoru questions and to talk about your fears.

Circle of Care Leeza’s Place
5000 Van Nuys Suite 110, Sherman Oaks, CA 91403
818-817-3259 F 818-817-3263

Circle of Care Leeza’s Place is an intimate and safe setting where caregivers and loved ones recently diagnosed with any memory disorder can gather for education and support, and to prepare themselves for the challenging journey ahead. Developed in response to the challenges Leeza Gibbons and her family encountered while seeking specific and needed support, and funded in full by the generosity of our community through the Circle of Care Foundation, Circle of Care Leeza’s Place offers new supportive settings for the purpose of
Educating, Empowering & Energizing.

All programs are FREE OF CHARGE & held on site unless otherwise noted.
Please feel free to contact Stefanie Elkins at 818-817-3259 or selkins@leezasplace.org.

Have a kind and respectful day.

What Do I Do When Someone is Grieving?

A doctor stopped me in the hall the other day and asked what he could do to comfort his brother whose son had just died. He told me that the son was only 25 and had died in a car accident. The doctor said that when he talked to his brother, all his brother had done was to scream and yell at him.  He didn’t understand why his brother reacted that way when all he was trying to do was to help.

As I sat down, I could see this doctor’s grief and pain. He was suffering for both the death of his nephew and because he couldn’t find a way to be supportive of his brother. He didn’t understand that grief, especially the early stages of grief can show up in many different ways. His brother wasn’t angry at him, he was angry that his son was dead. But he was taking it out on those around him. That is normal.

Everyone is different in their grief. Some people cry. Others get silent. Some can’t eat while others can’t get out of bed. Any emotion is okay when someone is in grief. And the grief will change as time goes on. When my Dad died, at first I was very quiet and wanted to be left alone. Then I couldn’t stop crying and needed people’s support. And now, years later, it is still an ache deep in my heart.

So how can we help?

1. There are no magic words to make the person feel better. Just say, “I am sorry for your loss.” Now I know you want to make them feel better, but trying to find the perfect words won’t help, but listening does. Listening is very healing.

2. So your next step is to listen, truly listen. If they start talking about their grief, don’t jump in with your own story about the loss you suffered in the past. It is not about you. It is about being present with them and their suffering. I admit that listening is hard. But try to sit still, be quiet and give them this gift.

3. The other thing you can do is to “normalize” their grief. What does this mean? The grieving person would like to be reassured that what they are feeling is normal and to feel less alone with their sorrow. So if they say, “I am so angry at _______.” You can say, “It is normal to be angry. That is a part of the grief process.” Any emotion is normal. That is grief.

4. Don’t be surprised if they don’t want to talk about their loss. Sometimes people need a break from their grief and would just like to have a normal conversation with you. In some cultures and families, grief is a private matter so please respect this and continue to be a good friend.

5. Lastly, if you are a healthcare professional, is it okay to cry with your patient? Of course it is. Sharing a few tears with someone else is a sign of compassion and understanding. But do not cry so hard that the patient then has to comfort you.

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.

“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

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.

A New Trend – Vigiling Services

Unfortunately, many patients are going to end up dying alone in the hospital, either because the rest of their family has died first or they are private people without any friends or family. I don’t know if you have heard of this but hospices across the country are providing a wonderful service. It is called vigiling. The hospice sends volunteers over to their local hospitals to sit with the patient who is dying alone. As much as nurses try very hard to be present for the dying, they have many patients to care for and can’t stay just in one room. So the volunteers sit in shifts and stay with the person until they die. Of course, these volunteers are highly trained and work cooperatively with the doctors and nurses. How wonderful. This patient has someone present in case they need help as they die and they do not have to feel lonely and afraid.

Now people who work with the dying would say that people live as they die. So if you have been a mean and hurtful person, then you may die alone. Or if you have lived a social life with lots of friends, then you will die surrounded by friends. Your death depends on your life.

No matter what, vigiling is still a good thing to do. People should not have to die in fear or in pain. We don’t know what brought this person to this moment in their life because we don’t know their story. And they are probably too ill to tell us about their life’s journey. Ultimately, we should show compassion and give our patients comfort as they die.

Have a kind and respectful day.

Why did they take my son’s body away so soon?

Dear Viki,

My son recently died at home with the help of hospice. They were great but I am still really angry that I didn’t know they would take my son’s body away so quickly. When the funeral people showed up, they took him away before I was done saying goodbye. Shouldn’t they know that isn’t right?

I am so sorry that was your experience. And I am sorry for your loss.

Here is what someone should have told you. When you call the funeral home for them to pick up your loved one, they come out within an hour or so. If you had wanted longer with your son, then you should have delayed calling the funeral home. But of course you didn’t know this and nobody explained it to you. Delaying calling them would have given you a little extra time for you to finish saying your goodbyes. You can’t delay calling them for days, but it is okay for a few extra minutes. (If you are anticipating a death in your family, you should ask the mortuary how long it usually takes to pick up someone who has died.) Once they arrive, they should be respectful and compassionate and give you a few more minutes, but they can’t wait for hours once they arrive.

Have a kind and respectful day.

Jumping to the Wrong Conclusions

On Grey’s Anatomy the other night, there was a family of three siblings waiting for their mother’s death. They seemed rather inconvenienced and one kept asking, “How soon will she die because I have a plane to catch?” At first the characters and the audience all thought, “How insensitive, how uncaring.” But as the scene and story progressed, the audience realized that we had jumped to conclusions. This was a devoted family that been flying in every time their loved one was at death’s door for a few years. And they had said their goodbyes and grieved, over and over again. They weren’t insensitive, they were exhausted. And at this point they thought they were just going through the motions one more time and she would recover. One sibling even said, “We love her and want to be with her when she dies.” And when the woman did die, the three siblings, sat down with her, cried and asked if they could spend more time with her before the body was taken away.

In watching this, I am reminded how easily we jump to conclusions about other people. We judge them before learning more about the situation. We assume the worst. I have been guilty of expecting the worst out of someone. I have learned to give people the benefit of the doubt. When I encounter someone who is being difficult or uncaring or rude, I remember that I don’t know what just happened in their life. Maybe they just found out that they have cancer or they just found out their spouse has filed for divorce. We just don’t know. So I ask, “Is there anything I can do to help? Is there anything I need to understand?”

I have also been guilty of being the overwhelmed caregiver who starts to care a little less. I hope that the nurses understood that caregiving is a long journey. And that when I visited my aunt, and could only bear to stay a few minutes instead of my usual longer visit, that they didn’t judge me but were compassionate. I hope they didn’t whisper behind my back. But, I don’t know. As healthcare professionals, we have to start from compassion and work from there.

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