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Behavioural Changes: The Importance of “Knowing the Person”

This story is shared with us by our colleague Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College. In this story, the nurse observes changes in behaviour of one of the residents. The nurse is not able to shake off the concern that something significant is about to happen. The story illustrates the nurses listening skills and her attempts to alert others to the changes. 

A woman in her late 80s with advanced dementia and COPD with limited communication.  She was usually kept engaged in hand activities, like folding laundry and dressing dolls.  The usual practice on the unit was for nursing staff to play music during morning medication rounds and engage residents with singing and dancing.  Usually this woman wouldn’t engage, even though her family said she loved music.

This woman’s COPD was typically mild, but one morning she developed a new respiratory congestion, that was relieved with inhalation medications.   At the time that the morning congestion started, she started to sing spontaneously.  She was singing “Wake me up before you go-go, I’m not planning on going solo”.  She sang this phrase over and over again.

The nurses were surprised at this sudden change. The resident did not normally engage verbally. The nurses wondered what caused this change in behaviour, they discussed it as a team and reported it to the doctor and asked the doctor to assess the woman’s chest congestion. The doctor said that since the chest congestion cleared with the morning inhalation treatments, it was not a concern.

When her family heard their mother singing, they were excited that their mother was more alert and active. They attributed this as a positive change to the way the staff was interacting with her.

The nurse assigned to care for her, who was most familiar with her, still felt that there was something else happening. She talked with the doctor again. The doctor still said since the woman was eating and drinking normally and her temperature was normal, no further investigation was needed.

The resident sang this song every morning for 5 days.  On the fifth day, she had a sudden increase in congestion. She was sent to hospital.  She died 2 days later in hospital from pneumonia secondary to COPD. Her daughter was with her at time of death. Other family members were not there. The family was concerned that she had not died in place, in her home, at the facility.

 

We’d love to hear about your experiences and thoughts on this story. Please leave your comments below.

 

Advocating for the Family of Persons with Dementia

This piece was written by our friend and colleague, Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College.

 

Depending on a long-term care agency’s policies, when a person with dementia enters the end-stage of life, management/administration may seek to transfer care to an alternate level of care (palliative care unit) away from the familiar long-term care setting.  Families are often caught unaware of this practice and often desire their loved one to remain in the known setting until death.

Families benefit from familiarity with staff, continuity of care, the permanent room setting is set as the person’s “home”, often for years, and it is less disruptive at the time when impending loss/grief is occurring.

The Practical Nurse can advocate for families to be informed of the level of care process/policy/practices upon initial admission to the agency.  This is more than advanced care directives. It is making sure the family knows the long term care policies and past practices on progression of care from admission to death.  The family should know if transfers may occur to/from acute care but also within the long-term care facility if/when their loved ones condition changes.

A key question to the family should ask is “Can the dying person remain in place (“home” room) in the final weeks/days/hours of dying?”

A woman in her late 90’s had been LTC for at least 20 years.  She had entered the facility walking and cognitively aware 20 years previous.  As her dementia progressed over the years, she was transferred within the facility to the special care unit (secured unit) in the last 10 years of her life.  She became familiar with that environment, could navigate room to dining room and back to “her apartment” which was filled with memories, trinkets and objects from her past.

Her family was highly involved and felt comfortable coming to the unit, knowing other residents there as well over the years.  Suddenly she experienced a rapid decline which required an acute care transfer.  Upon her return to the LTC facility, she was identified as requiring “palliative care”, and administration made plans to transfer her to an alternate unit in the facility.  Administration of the agency said she no longer had “special care unit” status and would be transferred to the palliative care unit.

When the family was informed about the decision to move her, they were very surprised and upset.  They expected her to be able to remain in the familiar setting until her death. The nursing staff of the special care unit went to the administration to advocate for the resident/family to remain on the unit.  However, the administration said the resident no longer fit the criteria of the unit and must be relocated in order to make space for a new admission to special care.  The nursing staff on the special care unit said that palliative care could be provided by their staff and they already knew about the resident and had a strong connection with the family to provide support.  The special care staff argued that the staff on the other unit would not have time to achieve the same level of trust with the resident and family especially since it was clear that the resident had little time remaining.

The resident’s condition was significantly deteriorated and was apparent death was imminent within days.  Administration still said the resident must be transferred off the unit.  Nursing staff went to the attending physician, who agreed that the woman should remain in a familiar “home setting” and also went to administration to add that it would not benefit the resident to have a new doctor on a new unit to take over care at this point.  Administration still said the resident would be transferred.  In the midst of all this, the family was kept informed of nursing and physician advocacy.  Unfortunately, the consistent message by administration kept adding more and more stress and worry to the family while they were coming to terms with their mother’s condition.  Ultimately, the nursing staff advised the family to advocate for themselves directly to administration.  The administrators were still saying no to the family until a member of the family identified themselves as a lawyer and commented that the situation was not fair or legal.  Upon this discussion, the administration agreed and the woman remained on the unit for two more days until she passed peacefully with the family present and familiar staff.

Ultimately, the person and family’s needs were able to be met.  However, this was not without significant worry and upset at a time when more support was needed.  The other resident’s family members were also witness to this (as they were present for the family since they were all consoling each other).  The other families could see the process of advocating that the nurses and physician were attempting.  This precedent did result in changes to agency policies and allowing a dying person to remain on the special care unit is more common though not guaranteed. Nurses are continuing to advocate for change.

 

What are your thoughts on moving persons with dementia when death is imminent? Please leave your comments below.

Music Therapy in Hospice and Palliative Care | Your Personal Soundtrack

Guest blog post by Jennifer Buchanan of JB Music Therapy – a Canadian company based in Calgary, Alberta. “Our mission at JB Music Therapy is to transform lives through excellence in clinical practice and education by bringing music into the foreground. JBMT has been providing music therapy services since 1991. We offer personalized programs for individuals coping with brain injury, mental health issues, learning challenges, dementia, palliative care, addictions, long-term care, autism, as well as youth at risk.”

Exercises

Your Personal Soundtrack

With a piece of paper by your side, or on your computer, construct the following chart. Make one age category per page. That way, if you need to use more paper—say for your teen years – you can do that and not get the age groups mixed up. That’s very important actually as you want to recognize when you were listening to what music.

 

AgeThe Music You Listened To During this TimeAssociated Memories
Birth to Grade School
Grade School
Adolescence
Adulthood
Later Life

 

Identifying Preferences

Your preferences are your greatest triggers to snap you into the mood you want to be in but first we have to identify our preferences. In order to do that we have several considerations: style preferences, tempo preferences and timbre preferences.

Style preferences are often one of the easiest markers of music preferences. This is the kind of music we like. From classical to country, there are definite styles that we gravitate towards. It is fun as well as important to recognize what your style preference are, but always leave yourself open to surprises. The activity forms on www.tuneintomusic.ca will help you begin to address the styles you most gravitate towards.

Your tempo preferences vary more often each day. The tempo of a song we like in the morning is often different than the speed of songs we like in the afternoon or just before we go to bed. When selecting a song for a party we often think of tempo first and select what we perceive is upbeat or relaxing depending the mood we want to evoke.

Finally there is your timbre preferences. Every instrument or voice carries with it its’ unique timbre. All timbres attract or repel the person who hears it.

Once you have addressed your music preferences, perhaps even documenting them you may begin to see patterns to your day, week, month or experiences.

So as you tune in to your music, may you find the peace, the joy, the laughter, and even sometimes the tears, that I have found with my music.

 

The McDonald Family

The McDonald family thought they were choosing just the right music until they heard it. This wonderful family spent every Christmas together. When the matriarch of the family was in the hospital, the entire family came to visit. Sharon McDonald, the head of the family, had always been close to each of her four children. Even after they were grown they all continued to live near each other and visited regularly.

Now in the hospital for Christmas, Sharon always had at least one family member at her side, if not two. When you walked past their door, the room was regularly filled with animated voices and laughter. I first met them a week before Christmas. I was walking to another patient’s room when Sharon’s son ran up to me and asked if I would come into their room for a moment. As I entered I was greeted by four other smiling faces. Each person had a bit of red in their hair, and it was easy to tell they were related. In the centre was Sharon. She lifted her hands and welcomed me with a two handed shake.

Then she said, “Christmas is a very important time for our family. We would be grateful if you would sing some of our favourite songs.”

I agreed. Before I started everyone was lively and cheerful. I sat down amidst the group and pulled out my guitar. Sharon turned to me and said, “Jennifer, I think we need a song that we won’t cry to. How about ‘Jingle Bells’?”

I played my liveliest strum and opened into the first verse, “Dashing through the snow,” I didn’t even make it to the chorus when the entire room stopped singing and started crying. The Christmas music, although the most suitable choice, was reminding the family more about what they wouldn’t have this Christmas (their mom at home) than what they did have. I slowed the music down and was about to stop when Sharon started laughing. And soon everyone else was laughing with her. “I guess it doesn’t matter what we sing I guess we are needing the music to help us cry.”

Music can positively and negatively trigger our feelings and memories. When we choose our music intentionally, amazing things can happen. Our choices are critical when finding the right music for the right moment and for the right purpose. However sometimes, as Sharon recognized, the music can help you understand what you truly need in a moment more than anything else can.

Jennifer Buchanan, MTA is the owner of JB Music Therapy and Author of this story and exercise found in her book ‘Tune In: use music intentionally to curb stress, boost morale and restore health.’  Jennifer is a popular keynote speaker at healthcare and education conferences. 

New Competency Profile for Licensed Practical Nurses in Alberta

I am deeeeelighted to share that the College of Licensed Practical Nurses of Alberta has launched the 2015 updated Competency Profile for Licensed Practical Nurses!

And most exciting for me is the section on Palliative Care!

Have a look at the new Competency Profile for Licensed Practical Nurses, in particular (document) pages 142- 146 for the Palliative Care Profile. I was honoured to be asked to provide input in the development of these competencies, and am thrilled with the outcome of this document. These are the most specific palliative care competencies for LPN/RPN practice that I know of.

Why are palliative care competencies for Licensed Practical Nurses important?

When I started writing our new text for Practical Nurses (to be published in 2016), I looked for any competencies for Practical Nurses. I looked at the CASN competencies for Registered Nurses. I looked at the National education standards for “Unregulated Care Providers”, the “Ontario Personal Support Workers Vocational Learning Outcomes”, the European Interprofessional Competencies… but did not have a set of competencies that focused on the role of the Practical Nurse.

It is important to have competencies to use when developing and offering education. It is helpful to have competencies to standardize education within a province and across the country. As an individual, it is helpful to have competencies to help identify areas to learn and grown.

 

If I have missed competencies, and if you know of other competencies for Practical Nurses, or Vocational Nurses (as they are sometimes referred to in the USA), please leave a comment below, and/or email me.

Green Burials

Guest blog post by Susan Benesch – owner, and licensed funeral director, of Earth’s Option Cremation & Burial Services in Victoria, BC. Earth’s Option offers celebrations of life, funeral services, burial services, cremation services and specialize in green burials. They also provide a list of grief support resources and a pre-planning checklist on their website.

 

Green Burial has become an option available to families looking to minimize their environmental footprint when a loved one passes away. Being green and environmentally conscience has become a way of life.

What are considered alternative funeral rights and rituals?

In the past we saw traditional funerals, whereby every person was embalmed, dressed, placed in a casket and put on public display for viewing. The funeral ceremony would follow the next day with a long procession out to the cemetery. The casket would then be buried in the grave in a concrete vault and the top of the grave would have a granite headstone.

Today we see alternatives to the traditional methods of disposition of the body due to:

  • The perception of a lack of land
  • The high cost of traditional services
  • The transient nature of our communities (people no longer have roots to one community for generations)
  • The relaxation by the church to insist on traditional burial versus cremation

For these reasons greater Victoria has approximately 93% cremation – the highest in North America. As cremation deals with the disposition of the body so quickly, this affords families the ability to take their time to plan a celebration of life whereby there are no time constraints to worry about the body being present at the ceremony or service. The emphasis now is on the life lived and not on the body, as it once used to be. People are finding unique ways in which to celebrate the life of their loved one. Families are choosing to bathe the body themselves, perhaps even dress the body themselves. In addition to a more traditional funeral, some families are choosing a ‘celebration of life’ that may take on a less sombre tone, in fact, for some it can be more of a party atmosphere where often DVD videos are showing of the deceased’s life. The Internet is being widely used to share these memories with family and friends worldwide. At Earth’s Option we have been actively promoting green burial and the added involvement of family members in the process.

What is green burial?

It’s a process whereby the body is buried in a simple biodegradable container or shroud. The body is not embalmed and it is typically buried in a place of interment designated to go back to the forest or natural setting. There are no specific gravestones to mark the grave however there can be the use of a communal marker. When the burial takes place indigenous plants are placed on top of the gravesite. The fundamental idea behind a green burial is that there are no man made products in the grave or intervention in the process of the natural decomposition of the body. In greater Victoria the only designated natural or green burial site is located at the Royal Oak burial park. It is important to note that some cemeteries who claim to offer green or hybrid burials may in fact still include some man-made product’s in the grave, including caskets and/or concrete burial vaults. This is only a means to capitalize on the green movement as it is not truly green burial.

The Victoria region has been the leader in the province of BC in the green burial movement. As such, the Green Burial Society of Canada is situated in Victoria and its goal is to see green burials offered across Canada.

At Earth’s Option we offer one price for basic green burial. Additionally, one would pay for the basic shroud or the basic green burial casket. There are several choices of caskets all of which have no man-made products including lacquer, paints, metal, etc. Families are invited to consider pre-planning and preparing for the services.

 

For more information on Earth’s Option, please visit their website, visit them on Facebook and follow them on Twitter.

Music Therapy in Hospice and Palliative Care | Gwen’s Story

Guest blog post by Jennifer Buchanan of JB Music Therapy – a Canadian company based in Calgary, Alberta. “Our mission at JB Music Therapy is to transform lives through excellence in clinical practice and education by bringing music into the foreground. JBMT has been providing music therapy services since 1991. We offer personalized programs for individuals coping with brain injury, mental health issues, learning challenges, dementia, palliative care, addictions, long-term care, autism, as well as youth at risk.”

 

The Music Therapist’s primary aim is to assess, identify and provide music experiences that will evoke the greatest positive response from individuals and groups in the areas of: comfort, communication, self and social expression, mood, motivation and perception of self-worth.

Music Therapy is the study and practice of how music affects people.  Our music therapists use music as their primary intervention when working with all population groups.  The music therapists will incorporate singing, vocalizing, instrument improvisation, exploration of unique sounds and other sensory and sensitive experiences.  Tempo, timbre, melody, harmony, pitch and genre of music are always considered – with the primary aim of supporting the needs of the clients/patients by easing anxiety/stress, opening doors to communication, engaging  and creating opportunity for inclusive social interactions.

Integrating music with supportive care of the dying is becoming more common in hospice and palliative care programs.  Our clinical work has indicated that music therapy in Palliative Care can:

  • Help to Decrease Anxiety.
  • Help with General Feelings of Discomfort.
  • Address Spirituality
  • Enhance Quality of Life.

A certified music therapist is a graduate of a Canadian Association for Music Therapy recognized music therapy education program.  Music Therapist Accredited (MTA) is given to music therapists who have completed their education (undergrad or masters) in music therapy, a 1000-hour internship, and have passed the Certified Board of Music Therapist’s exam.

 

Gwen: will you remember me?

            Being aware of your personal soundtrack can have some profound consequences.

For Gwen, music enabled her to become all that she could be just a month before she would die. Gwen, a fifty-five-year old blonde beauty, sat in a warmly decorated room near the window. Sixteen months prior, she was diagnosed with cancer. Now she sat in a hospice room near the outskirts of town. She was a model patient going through many rounds of chemotherapy and radiation. After her initial diagnosis and for several months, her family and friends were not aware of her cancer. Gwen would rarely ask for help. The care staff were just around the corner and would often enter her room to check on her. Except for occasional pain medicine she would smile at them and say, “I’m okay.’ Her husband had passed away many years before and she would often say she was glad he went first as this would have been very difficult for him.

She never expected the breast cancer to metastasize at such a rapid rate until she heard those fateful words, “There is nothing more we can do for you but give you a comfortable place to rest.” She had dreaded telling her only daughter and her sister the news. When she told them, they both broke down in tears and were soon making sure the doctors had done everything they could. Now in hospice, Gwen did all she could in her fragile state to prepare her loved ones for the inevitable.

When I was introduced to Gwen, she was wearing a colorful head scarf that covered what was once blond hair. Pictures of her and her family were all around the room, interspersed with colorful paintings and drawings.

“Come, sit close to me, I have been expecting you,” she said.

She pointed to the chair next to her chair by the window and rested her hand on my shoulder as I sat down. She turned slightly and in a sweet, gentle voice said, “I have had a lot of time to process what is happening to me, and understand I must die. I am worried about my daughter, Hailey, and my sister Julia. They are very angry. She took a deep breath and said, “They are not accepting that this is happening to me or to them.” She brushed a few strands of what was left of her hair away from her eyes and said, “I need you to help me.”

She pointed to several pieces of art around the room that she had created over her lifetime. She spoke of how her daughter was as passionate about painting as she was. “It’s in the genes,” she assured me and mentioned to me her sister had started taking lessons over the past few years. She told me that she had some ideas of how to integrate art and music while also helping her daughter and sister come to the understanding that she is going to die—and soon.

Just as my grandmother had a plan years earlier reaching into a desk drawer for my grandfather’s favourite song, Gwen’s plan also rested in the desk drawer she had asked me to open. “Take out the small stack of papers.”

I looked at the ten songs in front of me.

“Will you please play the songs on your guitar on Saturday and meet us here precisely at 2:00 p.m.?”

Before I had the chance to say, “I don’t work weekends,” her blue eyes crinkled and she touched my shoulder again. I would change my weekend plans.

That Saturday, I had the songs prepared and arrived precisely at 2:00 p.m. Her daughter and sister were sitting on either side of her. She asked me to sit in the corner on a chair. Once we were all in place she sat up a little further in her bed. She started by saying, “Thank you for coming.” She then turned to her daughter Hailey and her sister Julia and said, “I invited you here today because we need to say goodbye.” Silence. “I know that this is hard for you as it is for me, so I came up with an idea that could perhaps help all of us. Hailey will you please go into the side closet and take out the piece of canvas I asked Julia to bring last week.”

Hailey slowly walked over to the closet, opened the door, and brought the canvas that had been leaning against the wall inside. “Julia will you please reach into that top drawer and bring out the pastels that one of the nurses brought for me.” Julia walked to the end of the bed and opened the top drawer where the pastels were. There were many colors.

Once the two women were back on either side of Gwen, they heard her speak again. “I have asked Jennifer to play ten songs today. During the first song I am going to start drawing and when the song ends I am going to pass the canvas to you Julia and you are going to continue the picture adding in whatever the music brings to your mind.

“When the second song is finished then you will pass the canvas to Hailey who is going to continue from where you left off. We will pass the canvas back and forth after every song for the first nine songs and then relax and reflect during song number ten. The tenth song is a special song I have selected for the three of us.”

Julia and Hailey stared at Gwen not saying a word. Gwen’s determination was clearly visible on her face and to say anything would break the spell she had on all of us. Hailey passed the canvas to Gwen and reached into the box on Julia’s lap to select a couple of pastels. I took a deep breath. When Gwen looked at me and nodded slightly I started to play. I could not see what was being created on the canvas, but I could definitely see a transformation happening on the faces of the three women. The canvas did what it was supposed to—passing between each family member at the end of each song. No tears were shed, just a change of focus and an occasional smile as they passed on their contribution.

We sang many powerful songs. What a Wonderful World. Lean On Me. You’ve Got a Friend. Soon it was time for the last song. I was nervous as I strummed the first few chords as I knew there would be no more pastels on the canvas, only reflections of what was created. The highly emotionally charged song Gwen selected as the last piece was Louis Armstrong’s, “Wonderful World.”

Gwen put a few finishing strokes on the canvas and then held it up for each of them to look at. The tears they held back released and two arms went behind Gwen in an embrace as they gazed at the piece of art they created. I finished the last words and put my guitar down quietly. Gwen passed the canvas in my direction as both her daughter and sister’s faces were now embedded in both of her shoulders. I carefully put the canvas on a high shelf looking down on them so it could dry. It was a beautiful meadow with flowers of many colours. I left the room so the women could say goodbye.

Gwen had set the intention of using her life’s music soundtrack as the backdrop to already powerful relationships. It was a non-verbal means of sharing herself and her heart, and those songs allowed her to say a touching goodbye.

Follow JB Music Therapy on Facebook, Twitter, and YouTube.

Press Release – Death, Dying, and Grief: Avenues for Healthy Communication Help Children and Adults

BOOTHBAY HARBOR, Maine, June 29, 2015 /PRNewswire/ — Blazing new paths in the field of thanatology, Lynne Tobin, Andrea Warnick, and Katherine Murray spearhead distinctive programs for people to think, learn, and communicate about death, dying, and bereavement.

Lynne Tobin, a licensed professional counselor (LPC), works extensively with individuals and families during end of life journeys.

Tobin also facilitates group discussions on subjects as diverse as writing advanced directives, near death experiences, and views on life after death. “Death Cafe” discussions are held in local settings—a small restaurant, tearoom, or coffee shop—because she noticed “Participants feel more comfortable asking questions and sharing ideas in a casual environment.”

Tobin, in private practice in Boothbay Harbor, Maine, offers individual and group counseling, and specializes in anxiety and depression.  She advocates for patient-directed care in the state legislature and holds two masters’ degrees, one in education and one in counseling, and also studied thanatology at Hood College.

Andrea Warnick specializes in helping children who are experiencing the serious illness, dying, or death of someone they care about.

As an advocate for providing well-informed support for grieving children, Warnick counsels individuals, families, groups, and professionals. Her counseling and educational offerings include in person, webinars, and phone- and Skype-based counseling, making her accessible to clients throughout Canada, the U.S., and beyond.

Warnick is sought out by organizations for her dynamic presentation style and innate ability to help audiences feel at ease while exploring intensely difficult topics related to dying, death, and grief. Based in Toronto, Warnick received her master’s degree in thanatology from Hood College, adding to her credentials as a registered nurse.

Katherine Murray’s company, Life and Death Matters, opens channels of communication in palliative care and hospice for patients, families, caregivers, and professionals.

Murray’s life-long commitment to transforming palliative care through education and enlightenment is palpable in her prolific speaking, writing, and teaching.

Murray is a certified hospice palliative care nurse and a fellow in thanatology with a master’s degree in thanatology from Hood College; she recently released to the U.S. market the textbook and workbook: Essentials in Palliative Care: A Resource for Nursing Assistants. Murray’s blend of leadership, clinical and psycho-social expertise, along with her sense of humor, makes her a popular guest speaker for local, national, and international conferences.

Lynne Tobin, Andrea Warnick, and Katherine Murray are committed to action as champions of healthy communication in the field of thanatology. They are rewriting death education and blazing trails as death-doulas, blending compassion, insight, and professional expertise, to help people understand death—as a normal part of life.

 

Contact Lynne Tobin: Email; Facebook: Lynne Tobin LPC.

Contact Andrea Warnick: Website: andreawarnick.com; Facebook: Andrea Warnick Consulting.

Contact Katherine Murray: Email; Phone (Canada): (250) 652-6781 and toll free (Canada): (888) 788-6781; website:lifeanddeathmatters.ca. Books from Life and Death Matters are available on Amazon.com.

MEDIA CONTACT:
Lynne Tobin
(860) 966-3294
Email

Reflections on the 4th International Public Health & Palliative Care Conference 2015

In May 2015 I attended the Public Health and Palliative Care conference in Bristol, England. There were approximately 180 people who attended from around the globe.

There were many inspiring and innovative ideas for death education and death literacy, and many messages about compassionate communities providing care for the dying.

I found the following thoughts quite profound:

1. “Do not leave death to the experts.” – Allan Kellehear
2. “Remember that death is a social event with a medical component, not a medical event with a social component. The larger part of dying happens outside of the institution and professional care”. – Allan Kellehear
3. “End of Life Care does not begin with palliative care it begins with community. – Julian Abel
4. “Expand the team to include community as REAL partners, not just targets of care.” – Allan Kellehear
5. “Help people identify their “ring of confidence” including their friends, family and paid resources.”
6. “Put family cares/caregivers in the drivers seat, and find out what they want/need.” – Julia Verne

quote - death is a social event

Improve death literacy

One of the key messages of the Public Health Palliative Care conference was to improve death literacy. Interesting choice of words. What might that mean?

According to dictionary.com literacy can be defined as:

  1. the quality or state of being literate, especially the ability to read and write.
  2. possession of education: to question someone’s literacy.
  3. a person’s knowledge of a particular subject or field: to acquire computer literacy; improving your financial literacy.

To be literate means to be able to read and write, having or showing knowledge of literature, writing, etc. and having knowledge or skill in a specified field. Death literacy, then, may mean to be able to read and write about death, having knowledge of literature and writing about death, and having knowledge or skills related to death. I would suggest that death literacy is not only about being able to read and write about death and know about death, but also to be able to communicate about death.

In an active sense, being able to read or write does not help anyone if they are not willing to do anything with it, so I suggest that death literacy is the willingness to learn and communicate about dying and death. This is definitely a good goal for all of us!

Around the world groups are coming together to help people talk, write, create and understand more about death.

One of the projects I learned about while in England is The GroundSwell Project out of Australia. Their mission is to “develop innovative arts and health programs that create cultural change about death and dying, while championing others to do the same.” They value “creativity and innovation from unexpected places; intergenerational learning and sharing that enriches lives; collaboration and partnership that grows everyone; health promotion and community development for profound change.” Kerrie Noonan and her team are creative, they work outside the box, they are artistic, and they manage to reach a group of people that is not currently reached by hospice palliative care. Have a look at their website or follow them on Facebook and Twitter if you want to see some innovative ways to involve community. They celebrate a “Dying to Know Day” each August. I am thinking that I will find a small project to do in my circle in Victoria BC while they expand their community in Australia. If you want to join them also, get creative.

In previous blogs I have mentioned the “Death Cafe” as a place to meet and explore topics about death. One example of events where people gather to talk about death is sponsored by Hospice Northwest (Ontario, Canada). They have a wonderful event titled “Die-alogues”. Kathy Kortes-Miller, one of Canada’s leading death educators, introduced us to “die-alogues”. She tells the story of thinking that maybe only family or friends would attend, and her surprise when dozens of people turned up! Kathy writes, “Our standing room only events demonstrate that our community wants to engage and be active participants in learning about dying and death and supporting one another. ”

Do not leave death to the experts.

I am intrigued by this statement especially as people without professional degrees comes forward to care for the dying and bereaved. What can we learn from a fresh, “un-academic” perspective? What is the role of those without formal degrees in caring for the dying?  How can we learn to stand back and give space for emerging “death doulas” and “death midwives”,  etc. to participate? What do we need to learn about this? Can we practice a bit of “professional humility” as we learn to work outside of the “inter professional team”?

Expand the team to include community as REAL partners, not just targets of care.

I was impressed by the Murray Hall Community Trust in Dudley, England. This group formed in the early 90’s to help communities struggling in the area. Their mandate includes health and social care. Funding supports them to address a variety of needs – from child care to palliative and end of life care.

They designed services by listening to local people, and heard what the people wanted. They worked with domicillary care, debt counselling, etc.. They listened to the stories of the people, and helped them to develop solutions . A few years ago they heard Professor Allan Kellehear speak about compassionate communities and they said “This is what we do!”  A group of us who attended the conference were fortunate to tour their sites, and hear about their programs and learn from their experience.

“Remember that death is a social event with a medical component, not a medical event with a social component. The larger part of dying happens outside of the institution and professional care.” – Allen Kellehear

As a health care professional, I have thought – too often – that our team was a significant part of the dying person and family’s life.

In reality, most of the person’s living and dying does not include us, and should not include us. Hopefully when we are needed, we are there, and able to help, at pivotal times. During some periods of time, if we do our jobs really well, and if the disease progression is not complex and difficult, then we may not be part of their lives very long or very often.

“End of Life Care does not begin with palliative care it begins with community.” – Jules Verne

In her last weeks my mother kept repeating, ‘It takes a village to raise a child,… it takes a…. to care for the dying.” By the time she died she pulled her thoughts together, “It takes a village to raise a child and it takes a community to care for the dying”.  How can we help community to provide care with confidence?

Dr Deb Braithwaite routinely says, “This is not rocket science”.  We need to share with community that which we know, and  we need to make it simple not complex. And for those times when life and death are complex, we need to provide support and access to services.

Put family cares/caregivers in the driver seat, and find out what they want/need.

Help people identify their “ring of confidence” including their friends, family and paid resources. Family caregivers provide a huge service to those they care for, and they provide a huge service to our country. The financial value of their services, the unpaid hours of caregiving are immeasurable. There is research looking at the needs of the family caregivers. We need to listen and learn and respond.

 

If you’re interested in seeing some of the concurrent sessions, plenaries and conversations from the conference, have a wander through the Public Health Palliative Care Conference Youtube channel.

Did you attend #PHPC2015? Or do you have thoughts about my highlights from the conference? Feel free to add your links and suggestions to those that are here!

Reflecting on Death: First Nations People

This piece was written by my young friend, Lindsay Borrows. The shortened version is found in Integrating a Palliative Approach: Essentials for Personal Support Workers. – Kath

 

The Chippewas of Nawash Unceded First Nation is located on the eastern shore of the Saugeen (Bruce) Peninsula on Georgian Bay. We have over 2,000 band members, and about 700 live on reserve. These numbers represent our family, and we are all connected through systems of caregiving. These structures extend beyond the nuclear family and include our clan relations, adoptions and extended relatives. Part of having a large family means grief continually affects the entire community as people’s lives as members finish their journey in this life.

When tragedy such as death occurs, it is generally expected that people set aside their differences (whether political, cultural or religious) and gather together in support.

Few communities are entirely homogenous in belief and custom. Ours is no exception. Some that pass away are traditional Anishinaabe, others Christian, and most are syncretic, practicing a fusion of beliefs. Within this diversity, no two funerals are the same. There are, however, general traditions that help ensure that the deceased is not alone in their final walk home, and that the remaining family is supported as they grieve.

If someone is ill, many of the older people know how to listen to their breath and they can tell when the person only has a few days left on the earth. There are signs in nature as well, which indicate when someone is close to dying. When my great-grandpa passed away, his friend (now in his late 90s) saw four ducks circling in a pond. Then he looked up and, as if in reflection of the ducks, four birds circled overhead. He felt this was not a coincidence but was a message with important symbolism of the circle, the number four, and the birds. He immediately went home and his wife informed him that my great-grandpa had died.

So we see it is not just people involved in care giving, but we can trust nature is also there to provide comfort and closure in important ways. This is not just a human endeavour but extends to the other realms as well.

Days before the actual funeral, people gather and talk about the deceased. This is a time to honour the individual’s life, shed tears with relatives, and laugh! There is always humour as people get together and discuss memories. The older people speak Anishinaabemowin (our language), and we sing. The songs may include drumming, hymns in Anishinaabemowin or in English, or a special song that reminds people of the deceased. Sometimes the funeral is held at the community centre, other times at either the Catholic or United church on reserve. Both of these buildings are over three generations old. Sometimes a three-day wake is held at the home of the deceased. This protocol varies depending on the family and their needs.

A sacred fire is held after the person’s death, and only stops until they have been successfully sent on their journey back to the Creator and they have been buried.

The fire will often be burning for three days and young people continually keep watch. This isn’t seen as a punishment to keep the fire, but it is sacred. You enter a different dimension of time as you are engaged in that important work. You see and feel things that may not be apparent to others. People offer tobacco to the sacred fire and say a prayer when they arrive on the day of the funeral. Most consider themselves to be both a mourner and comforter as they rely on one another during these difficult times.

As people arrive at the community centre or church, they are often walking hand in hand, giving hugs, and sharing words of comfort. Even the reserve dogs sit around the building. They seem to keep watch and act as a welcoming committee of sorts. During the service people sing again, share more memories, and take one last look at the body of the deceased. They may put sweetgrass, cedar, sage or tobacco in the coffin, or pray or cry as they say goodbye. This can take over two hours depending on the number in attendance.

After the service, people follow the funeral hearse around the reserve, until it ends up at the graveyard. There will be drumming and a short prayer. As the person is buried tobacco, flowers, or other offerings gifts may be placed into the ground where the person is being buried as a sign of respect. Following the burial there is a community feast.

A plate of food is prepared for the departed soul, and placed in the sacred fire while an elder says the prayer.

People travel long distances to attend, and I usually overhear people say that we need to gather together more often, not just when someone passes on. To me this shows how positive the funerals are and even though there is great sadness, people feel good. They want to gather together more and remember how blessed we are to have life and to eventually be able to pass on in a good way.

 

Creating a Digital Estate

In our Death and Digital Property: What happens to your online life when you die? blog post we reviewed ways to protect your digital estate and specific online site policies.

So what is the best way to prepare your digital assets?

1. Take inventory of how much information you have on your computer and online. Write down a list of sites on which you have an account. You can download our Digital Estate Planning printable here.

2. Make a list of user names and passwords for your computer as well as for any websites or Web services where you store information or files.

3. Store these lists in a safe off-site place — don’t keep them near your computer. Make sure they are stored somewhere that your lawyer and heirs will be able to access. Remember to update this list when you change your passwords or add new websites.

4. Be sure to keep a local copy of any important documents or pictures that you keep in online storage places like iCloud, Flickr, Shutterfly, Dropbox or Google Drive.

5. Think about how you want your heirs to handle your digital estate. Would you like your Facebook friends to be able to see and post on your page after your death, or would you feel more comfortable if your profile is removed?

6. Once you have reviewed your digital information and made decisions on what you would like to do, write out a list of instructions. Talk to your lawyer about including these instructions with your will and other estate documents.

Prep your digital estate in six steps

By following these simple steps, you can ensure that your loved ones have access to the photos and other valuable assets that are part of your legacy.