“How we die is regularly in the headlines as we await government legislation to be tabled in response to the 2015 Supreme Court of Canada decision legalizing physician-assisted dying. Palliative care gets less attention, but it is what most of us will want at the end of life: drugs to relieve agitation, pain, agonal breathing and other symptoms. Nurses can provide soothing medications, but only after doctors have issued prescriptions, often with increasing dosages. But as the Crosbie family discovered, doctors are few and far between in long-term care facilities, especially on weekends. Their experience is a cautionary tale.”
In #Palliative #Care, #Comfort is the Top Priority. #HPM
"Although 40 percent of their palliative care patients can expect to be cured, 'there clearly still are both patients and oncologists who have an inappropriate association in their minds,' he said. 'They still associate palliative care with giving up.'
To the contrary, palliative care can help patients live fully, regardless of their prognoses."
Helping #Children #Cope with #ALS
"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches".
Patients aren’t told that death is near until too late. We can do better.
"Oncologists, cardiologists, and other specialists can often predict a patient’s rate of decline based on a specific disease, Obermeyer said. But patients, particularly those who are elderly, often suffer from more than one serious illness that make it more difficult to predict when they’re near death. So a pulmonologist might treat someone’s pneumonia, for instance, without recognizing it signals a broader decline".
Children's Grief Awareness Day.
"Children's Grief Awareness Day seeks to bring attention to the fact that often support can make all the difference in the life of a grieving child. It provides an opportunity for all of us to raise awareness of the painful impact that the death of a loved one has in the life of a child, an opportunity to make sure that these children receive the support they need".
Finding the Words: How to talk with children and teens about death.
"It's hard to talk to children and teens about death and dying, particularly when someone they love has died or might die soon. Our instinct as caring adults may be to shelter them from painful truths. Yet as Dr. Wolfelt emphasizes, what kids need most is our honesty and our loving presence.
This practical and compassionate handbook includes dozens of suggested phrases to use with preschoolers, school-agers, and teenagers as you explain death in general or the death of a parent, a sibling, a grandparent, or a pet. Other chapters include possible words and ideas to draw on when you are talking to kids about a death by suicide, homicide, or terminal illness. At times grown-ups must also have very difficult conversations with dying children; this book offers guidance. A final chapter discusses how to talk with kids about funerals, burial, and cremation".
Inpatient Hospice Palliative Care Directory free via iOS and Android.
"Although some people hope to remain at home for the duration of their illness, many people find that admission to an inpatient setting can also be helpful. The inpatient care settings in the directory include palliative care units, residential hospices and dedicated palliative care beds within local hospitals. Inpatient hospice palliative care support includes 24 hour care, specialist pain and symptom management and psychosocial support for patients and families.
The map provides access to a directory which includes more information about inpatient hospice palliative care settings across Ontario. The list of facilities below may not be complete - there may be hospice palliative care settings which are not in the directory.
For contact information and details about the facility, click on a specific location. If you want more information, contact the hospice or palliative care program directly".
This App Will Help You Sort Through Your Views On Dying.
"There are apps for nearly everything -- ordering food, catching rides and finding dates, to name just a few of the common tasks people accomplish via a swipe of a screen. Now, a Boston-based company wants to make thinking about and planning for death just as simple.
Cake, as in “a piece of cake,” is a website and soon-to-launch app that asks people a series of yes-or-no questions about the end of their lives in order to help them think about certain issues, plans and needs. The topics include funeral preferences and financial planning, as well as whether there are places people want to see before dying and how satisfied they would be with their relationships if they died tomorrow.
'One of the biggest problems right now is that even if you want to have these conversations, most of us have no idea where to start. It's daunting and overwhelming,' Chen said.
'Even though we know ourselves, we may not truly understand our own values around end of life because most of us haven't spent much time thinking about it. We developed the app as a way to ease people into thinking about the end of life'.
The app is targeted toward users who want to talk about dying to their loved ones, as well as those who want to share their end-of life-wishes with their doctors and caretakers.
'We interviewed dozens of health care professionals and routinely heard doctors say that bringing up advance care planning ‘is the hardest part of my job.’ Even doctors who are trained in how to have these conversations find it challenging to bring up,' Chen said. 'Additionally, there's often not a lot of time at the doctor's office. It makes sense to provide a synchronous tools that empower people to think about things on their own and with their families while they're in the waiting room, or at home'.”
Best Endings. End of Life Planning Made Easier.
"It’s not just medical decision at end of life: we each have personal preferences. This often needs time and thought.
3 points to keep in mind:
- Thinking about your end-of-life can be exhausting and emotional.
- Thinking through what’s important often means having ‘Aha!’ moments about yourself.
- Determining personal choices at end of life can give you and yours peace of mind.
What’s important?
What to consider?
How much do I want to know?
You are The Boss"!
Life and Death Planning: Low effort, High Reward. "Get Your Shit Together" Webresource
"There are a few simple things I wish I had taken care of before my life went sideways, like a will, living will, and some details jotted down. Should the ground fall out from under your feet—plan now for a softer landing. In fact, it's easy to finish the planning and basic papers your life needs.
In 2009 my husband was killed in an accident. In the following hours, weeks, and months I was shocked by the number of things we had left disorganized or ignored. Critical documents you can spend a fraction of the time doing now. Here are those core items, streamlined.
GYST™ now and breathe a huge sigh of relief. You can do it".
Advance Care Planning. Speak Up!
"Advance Care Planning is a process of reflection and communication. It is a time for you to reflect on your values and wishes, and to let people know what kind of health and personal care you would want in the future if you were unable to speak for yourself.
It means having discussions with family and friends, especially your Substitute Decision Maker – the person who will speak for you if you cannot speak for yourself. It may also include writing down your wishes, and talking with healthcare providers and financial or legal professionals"
Click on the above image to learn more.
Palliative Care Sooner for Patients But Also for Medical Professionals.
"Changing culture is a process. Awareness and understanding of palliative care is often limited, yet the benefits are discernible from better quality of life to care more consistent with patient preferences, to more recent data indicating improved survival. My experience with palliative medicine as a first-year medical student has made me realize how vital palliative care education could be for all medical students".