Interview with Katherine Murray, RN, BSN, MA, FT, CHPCN(C), nurse educator, founder of Life and Death Matters and Author, Essentials in Hospice and Palliative Care: A Resource for Nursing Assistants
Interview by Stephen B. Friedheim, Strategic Coach, Education Systems & Solutions, Chair, CER Advisory Board
Earlier this year, Jan and I attended the ABHES annual meeting in San Antonio. While there we met Katherine Murray, a Canadian, and her husband, Ted. Through our conversations we learned many things we didn’t know about Hospice and Palliative Care, a term that was familiar but vague to me. For those who share my lack of familiarity with the term, I learned that Palliative Care is a multidisciplinary approach to specialized holistic care for people with serious illnesses. It focuses on providing patients with relief from symptoms including pain, and emotional distress – whatever the diagnosis, from time of diagnosis. I also learned that
Hospice is not just a place or a program, but a philosophy of care, dedicated to providing excellent care for the dying person and the family through to and following the time of death.
Kath, as she prefers to be called, has focused her nursing career on this study. She even undertook a Masters on the topic at Hood College in Maryland. She has dedicated her life to sharing her knowledge and experience with others in the healthcare arena with the hope her training would enable the allied health care workers and nursing professionals (at all levels) to feel more comfortable in dealing with patients who are approaching death, as well as to give comfort to the families of these patients.
SBF: Thank you, Kath, for agreeing to share your experiences and observations about the challenges facing the nursing profession. To begin, tell me about your work history as a nurse, and describe the work settings during your career.
Kath: Steve, thank you for this opportunity to reflect on the challenges facing nursing, which are in fact the challenges facing our society.
I have been a nurse for over 35 years. I have nursed in small rural and large acute care hospitals, in the home and community setting, and with hospice and palliative care teams. For 25 years I have taught health care workers and nurses. In all settings, in all communities, I hear the same things, i.e., the challenge of providing excellent care for the dying person and their family members. The questions range from basic information on symptom management, to best care in the last days and hours for both the dying person and for their family… but mostly the challenge: how do we provide care for those who are dying with the many ups and downs of chronic illness and those dying over the years with dementia and frailty.
SBF: From your perspective, what particular skill or ability seems to be lacking in the nursing practice where you worked?
Kath: I think the piece that may seem like it is missing is the “art” of nursing – the ways of being communicate with care and compassion. I am not sure if it is missing, or if it is hidden behind the workloads, the paper work, and the distress that too often is part of the work of the health care team.
Perhaps that is one of the things that I love most about teaching hospice and palliative care – it is ALL about the art of caring, working with heart and with compassion while still being rooted in best practice.
When I develop education resources for teaching and teach about hospice and palliative care, I pull together all the pieces of curriculum, all the most important pieces on “ways of being,” and I strive to inspire people to understand how to express that knowledge in excellent skills and best practices. Someone once said that hospice and palliative care is like putting whipped cream and a cherry on the top of the education package. That sounds good to me.
SBF: Which healthcare professionals need specialized training and why?
Kath: Research shows that less than 3 percent of students in medical school and in nursing in the United States receive formal training on hospice and palliative care. Nursing and all those in the allied health care field require specialized education. Why? That is simple. I want them to have excellent education because they will care for your parents, my parents, and for you and me. And I want them to provide excellent care. This is not complicated. This is not rocket science. In fact, this is, like I said, the cherry on the top of the education package. I often hear faculty say, “The students were worried about this section on death and hospice and palliative care. Then, after they take this module, they are so excited that they come back and tell me how it helped them in their personal life, or in their professional life, and how it was their favorite part of the course.”
Why do they need the information? Because students want to learn and be comfortable with this information. It is always uncomfortable to not be prepared, but to not be prepared to care for someone who is declining, to not know how to be with the dying person, to not know how to support the family, is devastating and distressing for nurses and health care workers.
Why do they need this information? Because nurses and health care workers (including Nursing Assistants, Medical Assistants, Hospice Aides, and Patient Care Technicians) provide the majority of the direct care. The front-line health care workers provide the majority of the care in residential/long term care settings. When they know what to look for, what to ask, what to report and record, and how to prepare, they are so much more confident, they are more able to “be with” and “witness” and support the experience, and they are invaluable members of the health care team.
SBF: Have students in the allied health field been given adequate preparation on how to best treat or comfort the dying and their support group?
Kath: No. Often core curriculum only offers a few hours to address dying and death.
Even though the health care worker is the “heart, hands, eyes and ears” of the health care team, they are not educated on what common symptoms to look for, what information to gather, how to best record and report it, and what comfort measures they can provide.
When the health care worker does not know to report or to ask for a nurse to see a person, the patient may not get access to the help required, families are less satisfied with care, feedback is less than positive, and the experience for the entire team is less than satisfactory. The great news is that this is NOT rocket science! This is care that can be taught.
For the allied health care workers, I wrote a textbook titled “Essentials in Hospice and Palliative Care: A Resource for Nursing Assistants” (which really applies to all health care workers). In addition to this, I developed a workbook that is competency based, and provides exercises to help develop attitudes, knowledge and skill in providing care. To supplement the written materials, and to extend the classroom time, I developed podcasts and videos that both instructors and students can listen to at home and then come prepared to discuss during class. An Instructors Guide provides educators with ideas on how to teach the materials. For those who are not current in the area themselves, the podcasts and videos help the instructors to understand the basics, provide standardized education, which also decreases the preparation time that they require to teach. For health care workers, content on hospice and palliative care can be integrated throughout their curriculum, and/or inserted as a module near the end of their program. For nurses, it is important to integrate it throughout their courses. It is so valuable to examine dying from the perspective of health promotion, to look at dying with dementia during a course on gerontology, and to study about difficult breathing when studying the respiratory system. This fits beautifully with concept based education, and makes perfect sense.
Students in the allied health field have provided me with wonderful feedback about feeling more comfortable in knowing how they can increase a person’s comfort with simple positioning, or experiences they have had when using ideas shared in the “Comfort Basket.” One of the worst experiences for care givers is being with someone in pain and not knowing what to do and how to help. The materials I have developed help them learn strategies for supporting people through these difficult experiences.
SBF: Knowing the demographic changes we are experiencing in our county, do you expect training in the area of Hospice care will be an “in demand” skill for healthcare professionals?
Kath: Oh yes. Steve, the numbers in the United States are incredible. With the Baby Boomers aging, the number of deaths occurring annually will escalate significantly.
In 2014 there were over 2.6 million deaths in the USA. The annual deaths are expected to increase over 70 percent from 1995 to 2050, to almost 4 million in 2050.1 Just to help you visualize this… In the last 20 years, the number of deaths increased about 10 percent, in the next 35 years the deaths will increase 60 percent. So in less than twice the amount of time the deaths will increase sixfold.
In addition to the number of deaths, approximately 70 percent of the Boomers are going to die with chronic life-limiting illnesses. This means that they will require help for a longer period than their parents did, that they will have many ups and downs and close encounters with death before they die, and finally, that only half of them will know the week before they die that this will be their last week.
A hundred years ago approximately 5 percent of the population was over 54 years old. In 2012 almost 14 percent were 65 and older, and in 2029 about 20 percent of the population will be 65 and older.2 In addition to an increased percentage of people who may require care, there are fewer family caregivers to provide the care.
It is important that the American people understand that dying is likely to be a longer process than they typically think and that most people will have a decline that looks more like a roller coaster than a steep water slide.
Most people will not die with the steady decline often seen at the end of a cancer diagnosis which we better understand. The decisions to continue with life-prolonging treatments, the decisions to forego acute treatments, will be front and center. As a society we will need to be more willing and capable to have conversations about these topics.
We need to integrate the principles of hospice and palliative care in ALL CARE SETTINGS – in the medical units, the emergency departments, the long term care residential care settings, etc. Hospice and Palliative Care programs will NOT be able to provide service to all those who face death. It is the responsibility of all nurses and health care workers, to care for the dying well – in every setting.
Research suggests that 70 percent of the population want to die at home; however, research also indicates that 70 percent die in the hospital. Employment of home health aides is projected to grow 38 percent from 2014 to 2024, much faster than the average for all occupations.3
We are seeing this movement toward the integration of a palliative approach in Australia, England and Canada, and this is one of the most important discussions that we can have in health care today.
As Medically Assisted Death is legalized in more and more states, as it now is in Canada, it will be required that people have access to hospice and palliative care services. The more that our graduates can understand the basics the better care they will be able to provide in the process, the better they will be able to recognize the signs and symptoms of those requiring hospice and palliative care, and the more they will be able to be part of those hospice and palliative care teams.
Graduates with foundational hospice and palliative care training will be much more employable than those without it as the demand for qualified caregivers with this knowledge and skills continues to increase in demand for many years to come.
I see this as a basic requirement for all caregivers in the near future.
Leaders in gerontology working in long term care are starting to understand that unless their residents transfer to another care facility, that 100 percent of their residents will die. The long term care facilities are often doing the work of hospice, without the education or the funding, and the length of stay in government funded beds is getting shorter and shorter each year as demand for beds increases. It is essential that we prepare students to work and serve in these settings and that they are able to provide the best of care.
SBF: Would you be willing to send review copies to those who are interested in reviewing them?
Kath: We would be happy to provide a free review copy of our teaching resources to any college interested in looking at our resources for inclusion in their curriculum.
We have Instructors Guides, PPT teaching presentations, videos and a full podcast library free for download from our website: http://lifeanddeathmatters.ca/products/. If we can assist in your teaching, or learning, please don’t hesitate to contact us. Our books can also be purchased through our website: http://lifeanddeathmatters.ca/shop-usa/.
Steve, my passion is to help others provide excellent care for the dying person and their family. I love learning, I love teaching. I established my company, Life and Death Matters, 11 years ago to do exactly that – to prepare the workforce for the coming tsunami of dying that is upon us. I am committed to providing practical, delicious and digestible teaching and learning resources in hospice and palliative care. We invite those who want to provide excellent, engaging, and practical education, who want to strengthen their programs and integrate hospice and palliative care, to check out our website and give us a call.
Thank you so much for this opportunity to speak with you!
SBF: Kath Murray has taken her knowledge and experience to assignments in many parts of the world, including Nepal, Mexico, United States, and Canada. She has chronicled these opportunities in her texts, as well as in the accompanying videos which can be viewed on her website. As someone who has had experiences with Hospice in the passing process of my step-mother and Jan’s mother, I am a full-fledged supporter and advocate for the service, which transcends the usual time of dying with a comforting period of assistance for the patient and the family.