Thoughts on Physician Assisted Dying

It has been an incredible month. We attended conferences in Texas, Ontario and California. We are home now, absorbing the learning, and trying to integrate what we learned into our beings. Most profound for me was the opportunity to attend sessions addressing Physician Assisted Dying.

The debate is over. Physician Assisted Dying has been legalized in Canada. Health care professionals and administrators in hospices and palliative care (HPC) now need to develop policies outlining what services their HPC program will and will not provide. Physicians need to decide how to respond to requests, whether or not they are willing to provide a “hastened death” and if not, then decide who to refer people to. Nurses need to decide how they will respond, both within their formal work setting, but also, how they will respond as a family member or friend when the questions about hastening death are raised.

The entire health care team will need to reflect on how to respond when someone chooses a hastened death over the services of hospice and palliative care. Will we feel like we have failed? And if we feel that we have failed, how will we sit with that in the coming days, or more particularly, in the nights ahead?

As a nurse, if I choose to attend a death that has been hastened, how will that be for me and for the others who attend? Rather than witnessing the physical changes that often occur over a matter of days and hours, how will it feel to watch a person go from alive and cognitively intact, to waxen, cold, and dead,…. in just moments?

A few people have asked me what I think and feel about Physician Assisted Dying. I have avoided sharing my thoughts over the past years… but am willing to share my thoughts and the process I am going through today. Please read my thoughts knowing that like many of you, I am trying to make find my way in this new territory. These are my thoughts of the moment.

For much of my life I have been involved with caring for people and creatures who were dying. I cared for family, friends, community members and patients. For decades I sought meaning in caregiving and in dying. I found meaning and value in the last weeks, days and hours at the bedside. I searched for the benefits of family sitting vigil. I tried to find the good in the challenges that occurred. I came to believe that there was growth at the end of life, growth in the dying days, and sacredness in the act of caring for and being with.

Not only did I find value in the process of dying, I also sensed that on occasion the dying person was able to choose when they wanted to die naturally. Over the years I have been asked by friends to be with them when they were dying. Interesting to me, is the number of times when despite my limits and inability to be with someone constantly, I was there when they died.

For example: many years ago, when we were both young moms, my friend was diagnosed with breast cancer. I went to Vancouver to bring her home to the island. As I left her side at the hospital that night, I told her that I would not be able to return for ten days. I felt awful that I could not be there until then. I kept in touch by phone, and sent messages along. Ten days later I drove the island highway and made my way to her hospital room. Alongside her husband and her sisters, we companioned her. We waited with her and she died.

A similar story has played out many times since. Someone asking, “Kath, can you be with me when I die? Can you be with my family?” Try as I might to be there, I was often not able to attend 24/7 because of family and work commitments. Yet, often, death and I, were there at the same time. Natural death seemed to have a plan of its own.

With the legalization of assisted death, I look ahead and consider a new request. I can imagine that if I was in the Washington or Oregon, the request might be, “Kath, can you come and be with me when I take my medications?” or if in Canada, the request might be, “Kath, can you be here when I receive the injection from the doctor? Can you be here with my family?”

I wonder. How will I respond? In both cases, I do not have to be the one to give the medication. All that I am asked is to be present.

The request is simple enough. But then the planning. The planning seems surreal.

In Oregon and Washington states, once the person has met all the criteria, the person can set their own time and take the medications in the privacy of their own home.

In Canada, the dying person will need to arrange with a physician to inject the medication into their blood stream. What happens if the person decides they would like to live for another day, another hour? Would the person feel they need to go ahead with the plan because the doctor had arrived?

And as I think of the injections, I am reminded of the presentation at the Canadian Hospice Palliative Care Association conference by Dr David Wright, a nurse at the University of Ottawa, who is exploring the nursing perspective on this issue. David asked excellent questions: What does the nurse experience if the dying person chooses a hastened death over hospice palliative care? ….. He then asked… or was it someone else who asked, “Even though the physicians inject the medication, how many physicians do you know who can start an IV without the help of a nurse?” Nurses are a part of this process.

At the California Hospice and Palliative Care Association Conference, Anne Koepsell put forward four categories for how hospices respond to the requests for Physician Assisted Dying:
Embrace: hospice designates a social worker to respond to the requests, physician provides the prescription, staff are permitted to be present at time of death, and the hospice coordinates with Compassionate Choices.
Educate and support: hospice staff provide referrals to someone who is willing to discuss and assist with hastening death, the staff may or may not be present when death occurs.
Distance: hospice staff refer to a resource who will address the request.
Denial: hospice refuses to allow staff to discuss the request, and does not make referral.

At this moment in time, these are the three things that I know for sure:

1. I do not like the term “Physician Assisted Dying”. It is my opinion and my hope that physicians should assist every person in dying. Hospice physicians assist the dying person. They do not hasten it. So, I prefer instead to use the term, “Physician Hastened Death”, or “Hastened Death”.

2. I would like to see a world where everyone does have a CHOICE, a real choice, and I would like to see that Hospice and Palliative Care are one option. At this time, less than 30% of dying people receive services from a specialty Hospice Palliative Care team. When a person lives in remote and rural areas, when a person is not from a middle class Caucasian family, the person is much less likely to access HPC!

3. Finally, all HPC professionals need to be comfortable with talking with dying persons about the option to have a hastened death. They need to be able to hear the concerns and questions, to share the resources for hastened death, and to share what hospice and palliative care have to offer.

We, hospice palliative care professionals are at the bedside of people when they ask these questions. We, know how to talk about difficult things, how to talk about goals of care. We know the resources, we know the options, we can advocate. We are with friends and family when they ask questions about hastening death. No matter what people decide, we need to be comfortable with the conversation.

What are your thoughts on “Physician Assistant Dying”? Please leave your thoughts below, or chime in on our Facebook page.

Reflections from the Beach in Thailand

Happy New Year to friends and colleagues!

Ted and I are in Thailand visiting his brother, sister in law and their granddaughter. We had a week with Art and Aree, enjoying their farming community about five hours north of Bangkok. After seeing and being so impressed with their farming, we left for a small island, south east of Bangkok, near the Cambodian border.

reflections from the beach in thailand

Ko Kut (also spelt Ko Kood)  was a wonderful place to regroup and relax. The island has a dozen or so resorts, a few small restaurants, and some dive shops. Approximately 5,000 residents live on the island.

We swam, lay on the beach, lay under palm trees, hiked to a waterfall and swam some more.

reflections from the beach in thailand

Ted’s brother and family joined us for a final few days of play. We loved our time with them. Wonderful to see the two brothers talking and joking together. Wonderful to be with Aree and her granddaughter Calami and explore and swim together.

We are now headed to Cambodia for the last week of the adventure. Will visit the ancient Angkor Wat temple and explore that area.

It is interesting to me that, after a few weeks of relaxing, I had two very strong dreams about people dying. One was a person who is very dear to me, the other was a dream of a professional experience registering a young woman for hospice.

I am usually a very lively dreamer. I dream nightly. I dream many times a night. Ted teases me sometimes and says, “No wonder you are tired, you have travelled the world in your dreams!” My dreams are not prophetic. Some of my dreams are very vivid. I dream about many things. Sometimes I dream of death… but not usually twice in a short time.

Over the years I have talked, read about, heard about, and experienced “SURVIVOR GUILT” – the guilt that people feel when they are alive, and their loved ones, or the ones they care for, are dying.  Well, I am not burdened this holiday with “Survivor Guilt”, but have found myself  burdened with “Holiday Guilt”.

“Holiday Guilt” – the acute awareness that we are on a lovely long sandy beach and that, no matter how deserving we are of this holiday, there are incredible amazing wonderful hard-working caregivers: Personal Support Workers, Health Care Assistants, Continuing Care Assistants who are working their butts off, and who are not here on their holidays!

On a rationale level I know that we have worked soooo hard. The new book and resources have taken so much time and energy and focus. I have felt glued to a desk and a pen for the last few years. I know that when we booked this long awaited for holiday it felt perfect and so deserved. So why, when I thought about writing about the holiday on Facebook or on a blog, did I feel so guilty? Somehow, it just felt wrong that we are here, and the amazing caregivers are not.

I will consider this as we go into our last week of holidays.

We are thankful for Kim who is watching over the office while we are gone.  As this year comes to a close, in just an hour here in Thailand, I wish you well. I give thanks for the opportunity to be a hospice palliative care nurse/educator. I give thanks for the incredible people who teach me, the dying, the caregivers, educators, and colleagues. Happy 2015… may we learn and grow together!

Warm regards from  Thailand,

Kath

 

 

 

Reflections from Ontario

Ted and I have been travelling for the past week and have packed a lot into a short period of time!

We attended the PSNO PSW Conference 2014 in Markham, ON on October 21st. It was wonderful to meet 300+ personal support workers! One PSW, Derek, spoke about his work in hospice palliative care and highlighted some of the challenges. What stood out me was his emphasis on the value of team.

A big thank you to the PSW’s who stayed for the closing plenary. I know you were tired after attending for the entire day. I appreciate being able to tribute you and reflect on my learnings in HPC.

Next was the OCSA Annual Conference on October 22nd and 23rd.  Harry van Bommel, M.Ad.Ed., CTDP, spoke on Putting the ‘Care’ Back into Healthcare. Mr. van Bommel has developed resources to help people navigate and negotiate the system and these resources can be used and adapted to people’s local areas. He is as warm and as kind as when I met him in 1992 after the CHPCA conference in Winnipeg (my first HPC conference). I had the pleasure of meeting with Kathy Duncan from PalCare Network.  They have regular courses they offer in Newmarket, ON and an extensive library of palliative care books, manuals and journals available for loan. They also have a special conference coming up in March 2015 for PSW’s and community members that sounds fabulous, so if you’re in that area you may want to contact them to find out more information.

In the morning I met a beautiful woman named Jenny from Thunder Bay. She spoke about her work with such joy. Then she talked of the challenges and violence that has been happening in her community.  Within an hour she came to our table and told us about the shootings f the soldier in Ottawa.

As the day progressed and the story unfolded, my heart went out to those who mourn the death of Nathan. And along with other Canadians I share the collective sorrow that comes with witnessing violence born in mental illness.

Next up is Niagara Falls, Ottawa and then the OLTCA Fall Symposium in Markham which we’re really looking forward to.

 

"It was the richest period of my life"

Mom died on January 16th, two months and one week after being diagnosed with a terminal cancer.  We often talked of Joanne Lynn’s phrase “the blessing of a thoroughly dismal prognosis”. She referred to that blessing almost daily.

Mom described this as being the richest period of her life.  She determined what she would do and how she would live her last months.  She gathered her kids from across the globe, celebrated Christmas with marvelous foods and feasts, enjoyed short visits with a few close friends, savored emails, tied up loose ends, expressed love and enjoyed closure.  She hoped for and enjoyed the arrival of her sister just days before she died.

On Gabriola Island she was supported by the home care nurses, community pharmacist, medical office assistants, and a wonderful family doctor. She received the provincial palliative benefits including an electric bed!

At 81, as a life-long learner, she exchanged learning to use “Photoshop”, “Simply Accounting” and her computerized sewing machine to learn about dying. She faced death with curiousity. She talked about openly about dying.

As a professional teacher, a life-long fabric artist, she spoke less in the last months of fiber and fabrics and introduced me instead to artistry in dying.

Mom was a master planner – the calendar was booked months in advance. She planned events, attended to details, determined parameters and identified her preferences. Then death came – uninvited and unplanned. Clear communication of a ‘thoroughly dismal prognosis” enabled her to make decisions about things that were in her control, as well as decision of how to deal with that which was out of her control.  As death neared she said “I could not have planned it better….This has been the richest time of my life.”

Mom and me and medications.... (This raises an interesting question... Can you separate being a hospice nurse from being a daughter? To be explored in another posting...)