Putting Theory Into Practice
The overwhelming emotion when you first enter hospice is fear. Well not really fear just a blanket of sadness less about the place and more about how would this play out for how long and in what capacity. Perhaps though my eyes and reflection we identify a different emotion, one where we can find a safe place during this horrific sad time.
This is my first in a series on hospice. It will be part educational but mostly I will relate my experiences with Donna who entered hospice three years ago this past July 18. Though my eyes and experiences I hope others will see what hospice and palliative care brings to both the patient and the family. I believe in hospice and palliative care. It works because of the people involved. It gives both the dying and the living so much hope and sense of community and support. Because of hospice and especially those working and volunteering we are not alone when we most need support and care.
Google Ngram
Social media is the bees knees today. It will do everything from get rid of waxy build up on your kitchen floor to change all human knowledge. The reality is SM is a tactic, a powerful one that can achieve so much. Austin B. Fract shares his view and process for dissemination of information and how to achieve it. I talk about making it do more.
The Incidental Economist, A Hierarchy of Dissemination Tactics, Translating Research into Practice, Knowledge Translation
I want to address the anniversary of a death and how, at least for me, it consumes us and the way it impacts our recovery and adaption. There is no easy answer or one answer for everyone. It is part of the grieving process and becomes a tool for our growth and healing…maybe.
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx
Podcast 15: Selling Hope Not Reality. Carolyn is unable to join me. Today I talk about Cancer Centers direct to consumer adverting and how their message avoids the reality of those facing a terminal illness. We are little hope machines looking to find a way out of our fear when faced with a terminal diagnosis. It is at this point when we need support and guidance from our HCP most.
There are two articles from GeriPal here and here on patients receiving a terminal diagnosis and direct to consumer advertising by Cancer Centers. I relate these articles to my own narrative of Donna’s diagnosis and passing.
The Internet is a rich, vital, and important vein of information on healthcare, clinical medicine, and sharing. It sometimes takes trial and error to find the right information. Let’s see if we can remedy that.
Today we discuss ways to become an internet savvy patient with Diana Frame owner and founder of Frame Research which provides rigorous summaries of medical evidence to health care decision makers. Diana shares her practical and smart academic search process with Carolyn and I. We had her promised to return and teach us how to bring what we’ve found to our HCP. So keep an eye open for Part II.
Below are links that Diana identified as key sites for patients and caregivers.
Please let us know if this was informative and what else you would like us to discuss.
Finally, take a look at the Pubmed search interface that Diana created for the iPhone/iPad called pubsavvy. It makes your Pubmed searches sing. You can download it here.
MedlinePlus (It also has a Spanish language version)
Centers for Disease Control (especially good for infectious disease updates and various US health statistics)
Cleveland Clinic (has an online chat feature)
Google and Google Scholar can be very useful, as we discussed, particularly if you use specific search terms and refine them as you go. Try the “medical term” diagnosis rather than symptoms, and the generic name of drugs rather than brand names, for more rigorous results. (Do the opposite if you are looking for more basic patient care info, or descriptions of patient experiences). Your local public library can also be a good starting point.
Disease-specific organizations are good places for more targeted info, and some .orgs can help you find a community of people with similar health issues (the social learning piece we talk about), which is usually lacking at the .gov sites. For example – NCI is pretty comprehensive, but without the social aspect that one may find at American Cancer Society who has a list of ACA online communities.
Patients Like Me is a good one, not specific to cancer.
More in-depth evidence based medicine sites – these may require some familiarity with medical jargon:
PubMed is the big one
AHRQ Evidence reports
National Guidelines Clearinghouse – website is a little clunky to search, but if you do find a relevant hit on this it is usually a fairly comprehensive summary from a reputable organization
Cochrane Library – only summaries are available for free (and they are a little dry, even for academic medicine), but again these are reviews assembled with a rigorous methodology
Clinicaltrials.gov – a good place to look for ongoing studies, for those with an understanding of their or a loved one’s specific diagnosis. Also can be helpful to find clinical experts in your area, even if trials are not appropriate.
Carolyn and I discuss home hospice and in unit hospice. Carolyn shares what is involved with home hospice and how it differs from in unit care. I address my experiences first with home hospice and ending up on the unit. A very informative podcast that opened my eyes.
Carolyn and I talk about the caregiver and how end-of-life for a loved one does not mean end-of-life for the caregiver. We address how the team embraces the family and what they can do. I address my grief and hurt with the knowledge that the hospice team and the social workers were there for me as much as for Donna. This podcast brings back memories that still sting yet offer insight.
I interview a 20 something about living with Tetralogy of Fallot and how pre ACA he got his second surgery. We also talk about how a young invincible changes his view of health insurance changed.
I visited The National 9|11 Memorial Museum today. My reflections are based on being there and never leaving the area 5 blocks away. What this visit evoked from that day and months following. There are concentric circles of memories, beginning with those in the building, those who died, those to worked the pile, those who lost loved ones. These circles radiate out to the distant corners of the world. Yet each voice no matter which circle we reside in offers emotion and insight.
Here is the article from the New York Times on the Memorial Museum
Here is an article from the WSJ regarding my business following 9|11 here
