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by Nora J. Brennan, BSN, RN, CHFN

Care coordination is hospice and palliative medicine (#hpm) in disguise. I feel truly grateful to have found this wonderful community.  Some examples of what I do as a care coordinator (I’ve been called care connector and navigator as well) include:

CMSA Standards

• Communicating/sharing knowledge.
• Helping with transitions of care.
• Assessing patient needs and goals.
• Creating a proactive care plan.
• Monitoring and follow-up, including responding to changes in patients' needs.
• Supporting patients' self-management goals.
• Linking to community resources.
• Working to align resources with patient and population needs.
• Using Telehealth technology to remotely monitor patients to provide supportive care.

1. Is care coordination, as defined on the AHRQ website, part of your practice or could it be? http://www.ahrq.gov/professionals/prevention-chronic-care/improve/coordination/index.html
2. Has anyone used a care connector, care coordinator, nurse navigator, or transitions team to assist patients and their families dealing with serious illness. How did it work for you?
3. How did you measure outcomes?  Reducing re-admissions?  Improved patient satisfaction or experience surveys?

What: #hpm chat on Twitter
When: Wed 10/28/2015 - 9p ET/ 6p PT
Host: Nora J. Brennan, BSN, RN, CHFN.

You can access the transcripts and analytics of #hpm chats through @Symplur. 

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by Ankur Bharija

“I wish I had met someone who had gone through the same issues as mine to tell me it was all worth it and it was going to be alright!” said a friend as he recalled himself contemplating undergoing his 5th round of chemotherapy for a type of brain tumor many years ago. Now a cancer survivor of many years, he wants to help others who are walking the uncertain road he once did.

What if he was heard well at that time and today? What if there was someone to listen? What if the healthcare delivery systems were developed with these needs in mind? What if as a community we were better prepared to take care of the most vulnerable?

Palliative Care (for first-time Pallimed readers) strives to improve QOL and alleviate suffering of those patients and families affected with serious life-limiting illness ( for example cancer, dementia, advanced brain, heart, lung, liver, kidney disease to name a few). It is best added early in the course of a serious illness as an extra layer of support to address not only physical, but psycho-social and existential suffering as well. Patient and family values and goals are at the very center of all Palliative Care interventions.

At the recent #PallOnc symposium where providers from Palliative Care and Cancer Care met, generated a lot of valuable information; most notable of which were the insights from patient representation at multiple sessions. The health care systems strive to educate the public on various health matters but seldom do we see such an enlightening insights and feedback from patients.

Recent ventures like Weal Life and Can Surround are refreshing attempts at trying the bridge the gap in the community for this vulnerable population.

It is clear much needs to be learnt from the past or present experiences of those “who matter most” - the patients and families (our ‘users’) as they try ‘living well’ through the uncertainties and burdens of serious illness. Whether it’s about survivorship or fighting active disease or those navigating the last chapters of life due to advance age or illness.

It almost seems like for the patients and families to be empowered, the community-at-large around them needs be enlightened with what matters most to them. This may help the healthcare community, entrepreneurs, patient advocates, volunteers to come up with innovative solutions that are at the right intersection of 'hi-tech and hi-touch’.

Calling upon not only the healthcare providers but patients, survivors, caregivers, patient advocates, volunteers, social entrepreneurs, digital health innovators, to join the #HPM community as we hope to create a more enlightened community in taking care of those with serious illnesses.

Join the conversation here via Blog Comments or join us for #hpm tweet chat tomorrow - Wednesday, Oct 21st at 6p PDT.

Tweet chat Topic: Hearing out those “Who Matter Most” - affected with serious life-limiting illness.

Who should attend: Communities at the intersection of #epatient #s4pm #MedX #DigitalHealth, #HealthIT, #MedEd, #Geriatrics, #Cancer, #HCLDR.

Questions we will explore: What are some of the common "non-medical challenges" faced by those affected with serious illness? These may be things you overcame as a family but wished there were better solutions. Example - sitter for a family member, uncertainty about the future, searching for a peer-peer support community, assistance with mobility with disability etc.

What are some of the avenues out there that have helped you or others, in managing the burden of serious illness? (services or products - Apps, websites, local services etc). Example - Support communities like American Cancer Society, American Heart Association; or some early-stage ventures like HealthTap, Weal Life and Can Surround.

What are some of the most pressing gaps not covered by the traditional HC system and existing support communities, that require urgent innovation? What would you envision as an ideal platform for support, personalized solutions and answers? (aka Digital Health or non-tech solutions for the Palliative Care population that are patient-centric and improve QOL)

Dr. Bharija is a Geriatrician and Palliative Care physician, currently works at Stanford Health Care and is faculty at Stanford University School of Medicine. He enjoys cooking indian food, running and travelling with his wife. You can find him on Twitter - @DrAnkurB.https://twitter.com/DrAnkurB

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by Lizzy Miles

One of the most stressful aspects of losing a loved one is the time period where you know they will die soon, but you don’t know when it will be. The waiting period can be wrought with a range of emotions from sadness to anger to guilt.

Forgive Yourself

Guilty feelings are normal. When a loved one is dying, you may question your decisions related to their treatment. You may wish you would have spent more time with them. You may wish you would have handled the relationship differently.

Whatever your guilty feelings are, if you think it will make you feel better, you can apologize to your loved one. Even better, forgive yourself. The past cannot be changed, and feelings of guilt can lead to chronic stress.

Forgive Your Loved Ones

When your loved one is dying, you may feel anger at them for leaving you. You may feel anger that this situation was not expected, and life did not turn out the way you both had hoped. You may be mad that life is not fair.

Another common situation that happens during an impending death is feelings of anger towards others for not providing equal levels of caregiving and support. These feelings are normal, but can add to a person’s stress levels.

You may find that the feelings of forgiveness can bring peace of mind.

Keep a Notebook

When someone is dying, there are a lot of practical matters to address. Oftentimes, thinking about to-do lists leads to insomnia. Carry a notebook with you to record your thoughts as you remember things that you need to do throughout the day. This may help to reduce the racing thoughts.

Write in a Journal

The death of a loved one is a profound emotional experience. Journal writing can provide an emotional release for feelings that you do not want to express to others. Because a journal is private, journal entries can also reveal insights into repressed emotions.

Explore Expressive Arts

Expressive arts are forms of expression beyond journaling that aid in processing emotions. There is an entire field of study devoted to the therapeutic value in creative expression. The focus of the activity is on the process, rather than the end product.

Talk about Practical Matters

One of the stressors of coping with the death of a loved one can be the practical matters of how you are going to adapt to the tasks that your loved one may have performed.

For example, if your loved one was the one who took care of the bills, you may want to get the information on how to complete the tasks. This knowledge that you will be able to continue without them may provide a small degree of stress relief.

Ask Questions

The desire for information varies from person to person. Some people want to know everything, others would rather not hear the details. Medical professional take their lead from the family.  They provide information about the impending death, but they may refrain from telling you everything that they know. If it would be helpful for you to have more information, do not hesitate to ask.

Understand that some questions are difficult to answer. Prognostication is the estimation as to when a person will die. Even for experienced medical professionals, this is sometimes difficult to answer, as each individual is unique.

Watch Your Health

Research has shown that stress can impact the immune system. If you are feeling intense stress, take time to assess how you can take care of your health. Often when people are sitting vigil at the bedside of a loved one, they may not take time to breathe deeply, eat or sleep. All of these activities are important to maintaining good health.

Take a Break

When the dying period is prolonged or the loved one had an extended illness, an individual can feel overwhelmed by the situation. It is okay to step away for a while to take care of yourself. If you are the caregiver, ask for someone else to give you a break.

Some people are afraid to step away from the bedside of a dying loved one for fear that the person will die while they are gone.  Sometimes, however, that is the way the loved one would prefer it.

If you are meant to be there at the time of passing you will be. If you are not meant to be there, your vigil may actually delay the person’s dying. It does not mean they love you any less. Some people would prefer not to die in the presence of their family, and choose to die when the family steps out of the room.

Ask for Support from Staff

If your loved one has hospice care, there are several hospice team members that might be able to provide you additional support. All hospice teams have social workers who are trained in counseling. Additionally there are non-denominational chaplains and hospice volunteers.

If you are in a hospital setting, there are usually similar resources available to provide emotional support, if you ask for it.

Ask for Support from Friends

It is normal to feel like you are all alone when your loved one is dying. Your friends may not know that you need their help. If you feel overwhelmed, initiate the call to a friend and ask for their support.

Notify Extended Family and Friends

Sometimes an untapped resource for coping can be extended friends and family of your loved one, or your own extended family. In some cultures the extended family is much more in touch than in other cultures.

For cultures where the extended family is not in touch, there is still the possibility that these family members or friends would like the opportunity to say goodbye.

By notifying these family members prior to the death rather than after the death, you may elicit additional emotional support for both yourself and your dying loved one.

Share Memories

While the dying process can be a sad time, it does not have to be. Use this time to share memories with your loved ones. Even patients that are non-responsive are thought to still have their hearing intact.

Your loved one may not be able to respond, but that should not stop you from talking to them. Tell them the impact that they have made on your life and who you are as a result of knowing them. Share your favorite memories with them.

By talking about your memories you will be shifting your focus from the sadness of the moment to joy of your relationship with this person.

Enjoy the Silence

When the dying process is extended and you run out of things to say, it is okay to just "be." Meaning is in people not in words and sometimes there are no words to express how you feel, and that's okay.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience.
Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

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By Joseph D. Rotella

More and more academic centers are developing interprofessional education (IPE) programs to teach palliative care− and it makes good sense. Seriously ill patients and their families suffer as whole human beings and it takes a village of palliative care providers from different disciplines working together to comfort, support, and heal them. If we train palliative care professionals in silos, how can we expect them to be prepared for effective interdisciplinary teamwork when they emerge?

The feature story in the American Academy of Hospice and Palliative Medicine (AAHPM) Fall Quarterly (2015), Interprofessional Education: The More, the Healthier, highlights some of the programs across the country that are doing groundbreaking work in IPE.

It may be easy to see the promise of interprofessional training in palliative care, but it’s hard to do it well. In an AAHPM blog post accompanying the article, Dr. V.J. Periyakoil describes her personal experience as faculty for the VA Interprofessional Fellowship Program, “A gold standard is when all IPE fellows are taught at a level that is challenging to all of them in every single session.” That sets a high bar and she adds, “This area is really ripe for discovery and new innovation.” Like the pioneer teacher with K through 12 students in one classroom, IPE instructors strive for a curriculum that can engage learners with a wide range of individual competencies. When it works well, the students learn as much from each other as they do from their teachers.

When I think back on my own development as an internist and palliative care physician, I am struck by how much I learned informally from my colleagues in other professions. When I was a green intern on my first Cardiac Care Unit (CCU) rotation, it was an experienced (and extremely patient) CCU nurse who showed me how to run a code. Counselors taught me how to deal with challenging families and support the grieving. From chaplains, I learned to understand people in the context of the meaning of their life stories. Social workers modeled how to empower patients and families and to have healthy boundaries. A pharmacist shared best practices on stopping unnecessary medications. A nurse’s aide showed me how a bed bath can be a sacred ritual. I had some great physician mentors, but I think I learned more about palliative care from the interdisciplinary team than from other doctors.

My first experience with formal IPE was about a decade ago when I was a facilitator for a discussion group of medical, nursing, social work and pastoral care students following a screening of the film Wit. One medical student resented the whole process. He said, “This is absurd; no real doctor would behave as badly as the ones in this film.” The other medical students nodded their agreement. A nursing student rolled her eyes and said, barely audibly, “Actually, that is exactly what they do.” Her peers agreed. This was a fantastic teachable moment. IPE is not just about developing knowledge and skills. It’s also about opening minds and removing cultural barriers to teamwork.

Dr. Joe Rotella, MD MBA HMDC FAAHPM is the Chief Medical Officer, AAHPM and a frequent participant in #hpm (hospice and palliative med/care) chat.

What: #hpm chat on Twitter
When: Wed 10/14/2015 - 9p ET/ 6p PT
Host: AAHPM and Steve Smith, CEO of AAHPM

Some questions to ponder for the chat:
1. Are there opportunities for interprofessional palliative care training in your program? If so, how do they work?
2. What do you find to be the biggest challenges to interprofessional learning and collaboration?
3. What is the greatest lesson you ever learned from someone outside your profession?

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tweetchat.com, for ease of following.

You can access the transcripts and analytics of #hpm chats through @Symplur. 

Image credit: Valerie Everett from Indianapolis, USA via Wikipedia Creative Commons

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by Lizzy Miles

On a recent road trip, I was distracted. I stopped to get gas and accidentally picked up the diesel nozzle. I tried to put it in my gas tank, but it wouldn’t fit. The opening to the tank and the nozzle were incompatible. This is one example of the Japanese concept of Poka-Yoke (mistake-proofing).  While most Westerners are not familiar with the term, we all have benefitted by the design practice. The automobile industry does what it can to design cars in a way to prevent consumers from making mistakes. You cannot put the car in “Drive” unless you have your foot on the brake. Modern cars now remind you if you forget your keys or if you leave your headlights on.

On this particular road trip, I was on my way to visit my Uncle Paul who is a retired Union Carbide scientist. I asked him about mistake-proofing and how it works. There are several components to successful mistake-proofing:

1. Examine “what if?” – Wonder what could go wrong
2. Analyze all the steps in a process
3. Never underestimate the users’ ingenuity to bypass safeguards
4. When mistakes do happen, examine why they happen and contemplate how to prevent

I believe there are opportunities for hospice and palliative care organizations to integrate a Poka-Yoke approach.

Poka-Yoke is not new to healthcare, but is more prevalent in hospital environments. A friend who worked as a career med-flight nurse practitioner told me about several examples used in the hospital:

• Patients are asked multiple times for information confirming their identity
• Morbidity and Mortality Conference to review process and/or clinical errors
• Critical Incident Stress Debriefing (CISD) process after particularly rough cases

The difficulty with integrating a Poka-Yoke approach in hospice and palliative care would be that it requires an organization or industry to admit that it makes mistakes. In order to improve, we would have to admit that we are not as good as we could be. The challenge with that reflection is that our industry is having a hard enough time as it is right now. We do not always get positive press for what we do. A few years ago it was Sarah Palin and Death Panels. Now it’s inaccurate newspaper articles about hospices admitting non-dying patients just for profit.

I did an informal content analysis of the complaints about hospice in the comments section of one of the less favorable newspaper articles. There were caregivers who felt their loved one received too much medication and others who said there wasn’t enough attention to symptoms. Some commenters felt there wasn’t enough emotional support, and others felt it was “forced” on them. Coupled with what’s going on in the media with the “right to die” advocates, and the groups who are afraid they’re being pushed into hospice, there is clearly a theme here.

People want control of their own life and death. Right now, they don’t feel in control.

Yes, we have to acknowledge there is room for improvement. It is easy for us to point upstream and say that it is the hospitalists or the oncologists that are not making referrals, and that’s are number one problem with hospice, at least.  But is it? I challenge the #hpm community to brainstorm.

What is our responsibility as end of life professionals for the referral process?

How do we give patients and families a feeling of control?

What could hospice and palliative care professionals be doing better?

I have one suggestion for the answers: Community. This is what we are trying to do with Pallimed is to bring together the hospice and palliative care community to share ideas so that we can become better. But also, I believe (at least in my hometown) the hospices and palliative care organizations are not out in the community enough.  We need to step out of the shadows. We don’t have to talk about death all the time. Community engagement builds trust. Look at the events at St. Christopher’s in England. They have plays and art and curry night. They are integrated into the community so that when people need hospice, they are not afraid.

“Oh, hospice, I went to a potluck there last month.”