Resources Articles and Reports for professionals

In this section you will find a collection for interesting articles, reports and other materials that might be of interest for professionals in the filed of supportive care. Material will be added over time, many of them suggested to us by our members.

National Consensus Project’s GUIDELINES for Palliative Care (2019)

In case you missed it, the National Coalition for Hospice and Palliative Care is pleased to announce the publication of the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care, 4th edition (NCP Guidelines)!

The updated edition creates a blueprint for excellence by establishing a comprehensive foundation for gold-standard palliative care for all people living with serious illness, regardless of their diagnosis, prognosis, age or setting. We are asking for palliative care champions’ help with getting the word out about the NCP Guidelines.

Everyone is encouraged to review the Guidelines which are available for free download or purchase at also have a free webinar, handouts, slides and other communication resources.

National POLST Paradigm identifying those who are appropriate for POLST

On November 7, 2018 the National POLST Plenary Assembly Executive Committee approved new guidelines for health care professionals as to whom is POLST appropriate. These guidelines were built through consensus of members of the National POLST Research & Quality Assurance Committee, Program Standards Committee, and other leaders.

  • Download the PDF Appropriate POLST Form Use Policy (2018) or view their other polices on the web page.

American Bar Association’s Advance Directives: Counseling Guide for Lawyers

The American Bar Association’s Advance Directives: Counseling Guide for Lawyers recently published.

Described by the John A. Hartford Foundation as “a new resource [that] will help more people ensure that their wishes are known and carried out if faced with serious illness or the end of life,” the ABA explains it “is designed to assist lawyers and health care professionals in formulating end-of-life health decision plans that are clearly written and effective.”

Key Publication: Advanced Dementia

If you’d like to learn more about advanced dementia care and current expert recommendations, here is a link to a comprehensive article Advanced Dementia in the New England Journal of Medicine on this topic by Susan L. Mitchell, MD, MPH

Some Key Clinical Points from this article are:

  • Advanced dementia is a leading cause of death in the U.S.
  • Features include profound memory deficits, minimal verbal communication, loss of ambulatory abilities, the inability to perform activities of daily living, and urinary and fecal incontinence.
  • The most common clinical complications are eating problems and infections, and those require management decisions.
  • Advance care planning is a cornerstone of care; more than 90% of health care proxies state that patient comfort is the primary goal.
  • Observational studies do not show any benefits of tube feeding in persons with advanced dementia, and tube feeding is not recommended.
  • Observational studies show several benefits of hospice care. Patients should be offered palliative and hospice care services if they are available.

Report by Dr. Emese Somogyi
 – April 2013:

The 2013 Annual Assembly of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association was held in New Orleans from March 13 through March 16. It was a great event in a great city, and Hawai’i was well represented.   One of the highlights was Dr. Daniel Fischberg of The Queen’s Medical Center receiving the Academy’s Gerald H. Holman Distinguished Service Award. Dr. Fischberg’s involvement with Kōkua Mau was acknowledged in the program and from the stage.   New Fellows of the Academy with ties to Hawai’i include Dr. Fischberg and Dr. Kavita Sharma. Dr. Ayano Kiyota (HPH, Pali Momi) had a very interesting poster presentation. The meeting was attended by over 2,500 physicians, nurses, and other health professionals. Here are a few pearls:

  • Should you consider a feeding tube in your patients with advanced dementia? A new study confirms that there is no difference in survival when compared to assisted oral feedings.
  • For the next time someone talks about using feeding tubes for pressure ulcers, you might like to let them know that there is interesting new research data. There is no benefit in healing existing ulcers. The risk for developing new pressure ulcers in patients with feeding tubes is double. Why? Possible mechanisms include immobility due to restraints, skin irritation from diarrhea , and sacral edema from fluid overload.
  • Should you offer parental hydration in patients with advanced cancer? They found no advantage in terms of survival and subjective well-being. However if this is one of those situations when the family and patient associate hydration with hope and comfort (even after an attempt to educate them), you could make a case for using it.
  • Gabapentin is a promising new treatment for chronic cough.
  • So is acupuncture for dyspnea in COPD patients.
  • Giving your patient an SSRI for depression and an NSAID for pain? There is new data indicating a greatly increased risk of bleeding due to a drug-drug interaction.
  • Octreotide to reduce secretions in patients with malignant bowel obstruction is falling out of favor.
  • Do you have a cachectic patient on fentanyl patches? The actual dose achieved might be 50% less due to absorption issues.
  • Is your patient on opioid medication also driving? There is a 20 – 40% increased risk of road trauma.
  • Are you considering subcutaneous ketamine for chronic cancer pain? Don’t do it, too much toxicity and too little effect.
  • Frustrated with families and caregiver who just “would not get it”? Research tells us that the worse the prognosis, the greater the gap between what we are saying and what families are predicting.
  • Talking to patients about numeric pain scores:
    •      What is the number now?
    •      What is the worse you experienced in the x time period?
    •      What is the best you experienced in the x time period?
    •      What is your goal?
  •  Two pearls for treating heroin-dependent patients:
    •      “How much do you need to take to keep from getting sick?
    •  Some experts use the following estimate: $1/day heroin=1 mg/day methadone
  • Words that work:  “What would you need to have happen to be at peace when John dies?”

Finally, as the Board President of Kōkua Mau, I would like to use this opportunity to thank all of you for supporting Kōkua Mau. Because of that, the organization is able to continue its role of building our collective strength in caring for those who need it the most. As one conference speaker said: in doing this job, you risk your heart every single day.   Emese Somogyi Board President of Kōkua Mau  

Life’s tough choices – By Vicki Viotti.

With more facing difficult end-of-life decisions, awareness and enhancements in palliative and hospice care have grown tremendously. By Vicki Viotti. Star Advertiser, Oct 30, 2011, Section F1&F4

Hospice can be considered a dreaded word by many families caring for someone nearing the end of life. It suggests turning the page on the chapter about finding a cure and entering a phase everyone’s been avoiding. More: downoad PDF file

2011 Public Opinion Research on Palliative Care

We thought you might be interested in a recently released study from CAPC (Center for the Advancement of Palliative Care) about how people perceive the language used around hospice, palliative and end-of-life care.  Key findings include:
  • Language makes a difference. Palliative care is about improving quality of life, providing an extra layer of support, and having a team focus to patient care.
  • Palliative care is a relative unknown among consumers.
  • Once informed, consumers say they would be very likely to consider using palliative care if they or a loved one had a serious illness.
  • 95% of respondents agree that it is important that patients with serious illness and their families be educated about palliative care.
  • 92% of respondents say it is important that palliative care services be made available at all hospitals for patients with serious illness and their families.

You may want to have and in-depth look and download the 15-page pdf of the survey.

Care of the whole person

We hare happy to share with you this article from The American Cancer Society talking about the importance of palliative care. “Care of the whole person” by Jnnifer L.W.Fink, RN was published in Triumph Summer 2011 edition of ACS.

Click here for a PDF of the article

Twelve Breaths’: Lessons From The End Of Life

In case you missed the show “Twelve Breaths’: Lessons From The End Of Life” on NPR on July 25, you can listen to it on-line. (As long as this link by NPR is ‘hot’)

“When life draws to an end, family, caregivers and medical professionals face a flurry of often heartbreaking decisions. Are there any last treatments to try? How much longer can a patient hold on? When is it time to turn off the ventilator – and who gets to decide?”

Background materials of interest

For a number of important articles please check Pivotal Palliative Care Articles from The Center to Advance Palliative Care (CAPC).