Online Resources and Suggested Books for Advance Planning and End of Life

Hope Hospice has a terrific resource list on advance planning and end of life issues.  It’s divided into three sections:
* online resources for patients and families
* online resources for healthcare professional
* suggested books

I’ve copied it below.



Resources for Patients and their Families

Caring Connections
(provides Advance Health Directive forms)

Coda Alliance

California Coalition for Compassionate Care
[Editor’s Note:  this is now at]

Completing A Life

Family Caregiver Alliance

‘The Five Wishes’

Hospice Foundation of America


New Lifestyles
Free books that list local skilled nursing facilities, Board and Care homes and Assisted Living

Get Palliative Care

National Family Caregivers Association

Physician Orders for Life-Sustaining Treatment (POLST)

Resources for Healthcare Professionals

Academy of Hospice and Palliative Medicine

American Hospice Association

Caring Connections

Certificate Program for End-of-Life Care

End of Life/Palliative Education Resource Center

The EPEC Project (Education in Palliative and End-of-Life Care)

Hospice Foundation of America

Hospice and Palliative Nurses Association

National Hospice and Palliative Care Association

Physician Orders for Life-Sustaining Treatment (POLST)

Suggested Reading

The 36 Hour Day (A Family Guide for the Care of People with Alzheimer’s/Dementia)
Nancy L. Mace and Peter V. Rabins

All Kinds of Love: Experiencing Hospice
Carolyn Jaffe and Carol H. Ehrlich

An Ocean of Time: Alzheimer’s Tales of Hope and Forgetting
Patrick Mathiasen, MD

By No Means: The Choice to Forgo Life-Sustaining Food and Water
Joanne Lynn (editor)

Caring in Remembered Ways: The Fruit of Seeing Deeply
Maggie Steincrohn Davis

Choices at the End of Life: Finding Out What your Parents Want Before It’s Too Late
Linda Norlander,RN, MS and Kerstin McSteen, RN, MS

Dying At Home: A Family Guide for Caregiving
Andrea Sankar

Dying Well: The Prospect of Growth at the End of Life
Ira Byock, MD

Dying with Dignity: A Plea for Personal Responsibility
Hans Kung and Walter Jens

Facing Death and Finding Hope: A Guide for the Emotional and Spiritual Care of the Dying
Christine Longaker

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Maggie Callanan and Patricia Kelly

The Four Stages of Hope: Using the Power of Hope to Cope With Dying
Cathleen Fanslow-Brunjes, MA, RN

Helping Grieving People: When Tears Are Not Enough: A Handbook for Care Providers
Shep J. Jeffreys, EdD.

I’m Here To Help: A Guide for Caregivers, Hospice Workers, and Volunteers
Catherine Ray

On Death and Dying
Elisabeth K bler-Ross, MD

Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill
Cappy Capossela, Sheila Warnock and Sukie

Distinctive features of saccades in PSP

Researchers found that there were several differences between PSP patients and normal controls in terms of eye movements:

* Square-wave jerks are “more frequent, larger, and more markedly horizontal in PSP.”

Here’s a definition from the abstract: “Square-wave jerks (SWJs), consists of saccade pairs that appear purely horizontal on clinical inspection: the first saccade moves the eye away from the fixation target, and after a short interval, the second saccade brings it back toward the target.”

SWJs occur in healthy controls.

* In PSP, there is a “loss of a vertical component in fixational saccades.”

Here’s my layperson definition of a saccade: It’s a constant eye movement that changes the position of gaze. When you stare at something, your eyes are not still. They are constantly moving back and forth as well as up and down.

In PSP, the eyes are no longer able to make these small adjustments up and down (vertically). This is part of the vertical supranuclear gaze palsy that is a trademark symptom of PSP. The authors suggest that “small saccades lose their vertical component in PSP, and this property may help clinicians differentiate PSP from other parkinsonian or cerebellar disorders.”

* In PSP, “normal fixational saccades (microsaccades) are rare.”

The saccades in PSP are not small as in healthy controls. The saccades are larger movements that meet the definition of “square-wave jerks.” As we learned in the first item above, the SWJs in PSP are more frequent and larger than are seen in healthy controls.

I’ve copied the abstract below.


This is the abstract:

Journal of Neuroscience. 2011 Mar 23;31(12):4379-87.

Distinctive features of saccadic intrusions and microsaccades in progressive supranuclear palsy.

Otero-Millan J, Serra A, Leigh RJ, Troncoso XG, Macknik SL, Martinez-Conde S.
Barrow Neurological Institute, Phoenix, Arizona, Veterans Affairs Medical Center, Case Western Reserve University, Cleveland, Ohio, Institute of Clinical Neurology, University of Sassari, Sassari, Italy, California Institute of Technology, Pasadena, California, and University of Vigo, Vigo, Spain.

The eyes do not stay perfectly still during attempted fixation; fixational eye movements and saccadic intrusions (SIs) continuously change the position of gaze.

The most common type of SI, square-wave jerks (SWJs), consists of saccade pairs that appear purely horizontal on clinical inspection: the first saccade moves the eye away from the fixation target, and after a short interval, the second saccade brings it back toward the target.

SWJs are prevalent in certain neurological disorders, including progressive supranuclear palsy (PSP).

Here, we developed an objective method to identify SWJs. We found that SWJs are more frequent, larger, and more markedly horizontal in PSP patients than in healthy human subjects.

Furthermore, the loss of a vertical component in fixational saccades and SWJs was the eye movement feature that best distinguished PSP patients from controls. We moreover determined that, in PSP patients and controls, the larger the saccade the more likely it was part of a SWJ. Furthermore, saccades produced by PSP patients had equivalent properties whether they were part of a SWJ or not, suggesting that normal fixational saccades (microsaccades) are rare in PSP.

We propose that fixational saccades and SIs are generated by the same neural circuit and that, both in PSP patients and in controls, SWJs result from a coupling mechanism that generates a second corrective saccade shortly after a large fixation saccade. Because of brainstem and/or cerebellum impairment, fixational saccades in PSP are abnormally large and thus more likely to trigger a corrective saccade, giving rise to SWJs.

PubMed ID#: 21430139 (see for this abstract only)

5 Cases of Early Stage PSP (Pre-symptomatic)

Banner Sun Health in the Phoenix area encourages retirees in Arizona to donate their bodies and brains upon death. Many are neurologically normal. These neurologically normal brains are tremendous helpful in conducting research.

In this study of 277 brains donated to Banner Sun Health, they found five cases where the pathology seemed like “early PSP.” None of these five cases had any clinical symptoms of dementia, parkinsonism, or PSP. “Incidental” is the term neuropathologists give to such cases. So, incidental Lewy Body Disease is where the brain contains Lewy body pathology but there were no clinical symptoms of Parkinson’s Disease. And “incidental PSP” is where the brain has some PSP pathology but there were no PSP symptoms while the person was alive.


Parkinsonism & Related Disorders. 2011 Mar 18. [Epub ahead of print]

Neuropathological findings of PSP in the elderly without clinical PSP: Possible incidental PSP?

Evidente VG, Adler CH, Sabbagh MN, Connor DJ, Hentz JG, Caviness JN, Sue LI, Beach TG.
Department of Neurology, Mayo Clinic, Scottsdale, AZ, USA.

AIMS: We aimed to describe cases with incidental neuropathological findings of progressive supranuclear palsy (PSP) from the Banner Sun Health Research Institute Brain and Body Donation Program.

METHODS: We performed a retrospective review of 277 subjects with longitudinal motor and neuropsychological assessments who came to autopsy. The mean Gallyas-positive PSP features grading for subjects with possible incidental neuropathological PSP was compared to those of subjects with clinically manifest disease.

RESULTS: There were 5 cases with histopathological findings suggestive of PSP, but no parkinsonism, dementia or movement disorder during life. Cognitive evaluation revealed 4 of the 5 cases to be cognitively normal; one case had amnestic mild cognitive impairment (MCI) in her last year of life. The mean age at death of the 5 cases was 88.9 years (range 80-94). All 5 individuals had histopathologic microscopic findings suggestive of PSP. Mean Gallyas-positive PSP features grading was significantly lower in subjects with possible incidental neuropathological PSP than subjects with clinical PSP, particularly in the subthalamic nucleus.

CONCLUSIONS: We present 5 patients with histopathological findings suggestive of PSP, without clinical PSP, dementia or parkinsonism during life. These incidental neuropathological PSP findings may represent the early or pre-symptomatic stage of PSP. The mean Gallyas-positive PSP features grading was significantly lower in possible incidental PSP than in clinical PSP, thus suggesting that a threshold of pathological burden needs to be reached within the typically affected areas in PSP before clinical signs and symptoms appear.

Copyright © 2011 Elsevier Ltd. All rights reserved.

PubMed ID#: 21420891

Painful stimuli in face differentiates PSP and MSA-P

An Italian research team has put out a research paper comparing TCR (trigemino-cervical reflexes) in MSA and PSP.

TCRs are “electromyographic responses induced by electrical stimulation of the trigeminal nerve and recorded in the neck muscles.” Neurologically-normal people have TCRs in response to painful stimuli in the face; the head visibly retracts.

A research paper published in 2008 from the same Italian team showed that TCRs were absent in PSP, probably due to brainstem degeneration. TCRs were detected “in patients with PD, albeit showing a longer reflex latency than that found in healthy controls… These results suggest that absence of TCRs may be useful in supporting the diagnosis of PSP and may represent a potential tool for distinguishing PSP from other parkinsonian syndromes.”

Since MSA and PSP can look alike, the team decided to “investigate the usefulness of TCRs in differentiating PSP from MSA.” The authors note that the “differential diagnosis of these two conditions can be difficult,
especially when specific neurological signs, such as dysautonomy or vertical gaze palsy, are not obvious.”

The researchers compared 10 people with a clinical diagnosis of MSA-P to 10 people with a clinical diagnosis of PSP. (The neurophysiologist testers were unaware of the clinical diagnoses.) They found that all 10 patients with a clinical diagnosis of MSA-P demonstrated TCRs, and all 10 patients with a clinical diagnosis of PSP has no TCRs. “An important result of the comparison of the two groups of patients in our study is that no differences were found in terms of disease duration and severity.” The authors believe that PSP and MSA-P have different levels of brainstem degeneration.

The authors conclude: “Trigemino-cervical reflex recording is a rapid neurophysiological method, which could assist in the differential diagnosis between PSP and MSA-P.” The authors call for another study to include MSA-C patients.

This finding will be of interest to the PSP folks: “we found that PSP patients have high pain thresholds, although this feature cannot differentiate these subjects from MSA patients.” The authors speculate this is due to dysregulation of the pain processing contro.”

One weakness of the study is that these are clinical diagnoses. As the authors point out, PSP and MSA can be confused.

I’ve copied the abstract below.


Clinical Neurophysiology. 2011 Mar 9. [Epub ahead of print]

The contribution of trigemino-cervical reflexes in distinguishing progressive supranuclear palsy from multiple system atrophy.

Serrao M, Di Fabio R, Bartolo M, Perrotta A, Tassorelli C, Coppola G, Davassi C, Padua L, Sandrini G, Pierelli F.
Department of Medical and Surgical Science and Biotechnology, “Sapienza” University of Rome ICOT – Polo Pontino, Latina, Italy; Rehabilitation Centre Policlinico Italia, Rome, Italy.


OBJECTIVE: Trigemino-cervical reflexes (TCRs) are electromyographic responses induced by electrical stimulation of the trigeminal nerve and recorded in the neck muscles. Trigemino-cervical reflexes are detectable in Parkinson’s disease, whereas they are absent in progressive supranuclear palsy (PSP), an atypical parkinsonism associated with brainstem degeneration. To date, no study has investigated TCRs in multiple system atrophy (MSA), another atypical parkinsonism associated with brainstem involvement, which resembles PSP.

METHODS: To understand whether TCRs are helpful in differentiating PSP from MSA, we compared the TCRs recorded in 10 PSP patients with those obtained from 10 patients diagnosed as having probable MSA, parkinsonian type (MSA-P).

RESULTS: Trigemino-cervical reflexes were not recorded in any of the PSP patients, while they were clearly detectable in all the MSA-P patients.

CONCLUSIONS: Trigemino-cervical reflex recording is a rapid neurophysiological method, which could assist in the differential diagnosis between PSP and MSA-P.

SIGNIFICANCE: This study further improves our understanding of the different neuronal functioning of extrapyramidal disorders. TCRs monitoring may be useful to support the diagnosis of atypical parkinsonisms especially when clinical evidence is uncertain.

Copyright © 2011. Published by Elsevier Ireland Ltd.

PubMed ID#: 21396886 (see for this abstract only)

Lack of thirst distinguishes PSP from MSA-P and PD

Hypodipsia is “abnormally diminished thirst.” This German research team (one of the best in the world for studying PSP) concludes that hypodipsia is helpful in differentiating PSP from Parkinson’s and MSA-P.

Movement Disorders. 2011 Mar 7. [Epub ahead of print]

Hypodipsia discriminates progressive supranuclear palsy from other parkinsonian syndromes.

Stamelou M, Christ H, Reuss A, Oertel W, Höglinger G.
Department of Neurology, Philipps University, Marburg, Germany.

BACKGROUND: The objective of this study was to evaluate whether the sensation of thirst differs between patients with progressive supranuclear palsy (PSP), multiple system atrophy with predominant parkinsonism (MSA-P), and Parkinson’s disease (PD).

METHODS: We administered a standardized thirst questionnaire to age-, sex-, and stage-matched patients with probable PSP, PD, and MSA-P and healthy controls (HC), n = 15/group. In an independent cohort (n = 10/group), we provoked thirst by infusing hypertonic NaCl in age-, sex-, and stage-matched patients with PSP, PD, and MSA-P and recorded plasma osmolality and thirst (visual analog scale).

RESULTS: On questioning, 73% of PSP patients reported a reduced sensation of thirst (hypodipsia) compared with previous years (HC, 0%; PD, 7%; MSA-P, 7%; P < .0001). On NaCl infusion, PSP patients reported significantly lower thirst than did PD and MSA-P patients for all times from 20 to 95 minutes (P < .05). The thirst score at 25 minutes discriminated individual PSP patients well from PD and MSA-P patients.

CONCLUSIONS: Hypodipsia appears helpful in differentiating PSP from PD and MSA-P.

Copyright © 2011 Movement Disorder Society.

PubMed ID#: 21384428 (see for this abstract only)