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.

Assisted Dying….

Two physicians are diagnosed with a terminal illness.  Both physicians worked at Mt Sinai Hospital. Both physicians discuss dying, death, and their thoughts on Physician Assisted Dying.

Dr Donald Low, Canada’s SARS physician.

Dr Larry Librach, Palliative Care Physician.

Both physicians are articulate, and both have great rationale behind their viewpoints.

In the coming years the courts will decide whether or not to legalize Assisted Dying. Guidelines and parameters will be set.

What do we need to know in order to enter discussion and make informed choices?

First and foremost, we must have clear definition of words and terms related to the topic.  (Who will define?  What definitions will we use?)

Second, we need to listen and learn from those who face death, those who work with the dying, and those who care for the living.

Third, if Assisted Dying is legalized, then how will we as a society provide these services?

Your thoughts?

 

Making sure that you understand the terms related to Physician Assisted Suicide

The BC Supreme Court decided to eliminate the ban on Physician Assisted Suicide last month. In the aftermath it appears that there is considerable confusion on the definition of Physician Assisted Suicide as well as related terms. I felt it was important for me to provide clarity on some of these issues.

 It is essential that we help students and health care staff to understand the following terms:

  1. Allow natural death
  2. Do not resuscitate
  3. Euthanasia
  4. Sedation
  5. Palliative sedation therapy
  6. Assisted suicide

Image courtesy of Pashta Mary Moon

1. Simply put, “ALLOW NATURAL DEATH,” indicates that the person does not want artificial means to keep them alive. What does this look like?
When they are no longer able to eat solids, do not put in a feeding tube.
If they are no longer able to swallow fluids try thicker fluids.
If they are not able to swallow thickened fluids, provide mouth care.
If they can not breathe independently do not put them on a respirator.
When their heart stops beating they do not attempt to resuscitate them.
It does not mean withholding comfort measures. Ideally the person’s Advance Care Plan will inform their substitute decision makers if they want treatments such as antibiotics for an infection.

2. Do NOT resuscitate – should more accurately be “Do NOT ATTEMPT resuscitation“.  Far too often I hear people ask  “If you die do you want to be resuscitated?”  We can not in truth offer this!  We can only offer to ATTEMPT resuscitation.

And of course, the other piece of information that we should provide is the correct information on how often CPR is effective for someone with their condition, and what the negatives effects of performing CPR on this person would be. For example, this procedure can be invasive, result in broken bones, and can interfere with the family being able to share a more gentle style of being with and caring for a person in the last moments and being with them following death.

3. Sedation or Consequential Sedation… (also known as drowsiness) is a common side effect of medications for symptom management.  Sometimes the person receiving the medication, (example – Morphine), may be drowsy for a few days after starting the medication or following the increase in dose.  This is a normal side effect.

If the person is not dying, then the side effect usually wears off within about 3 days.
If the person is dying, then they will be sleeping more because of the dying process, not because of the medication. This is very important for families and staff to understand.  Far too often family think their loved one is dying or has died because of medication. They need good information sharing to understand that the normal dying process includes increase in sleeping, and to discuss the effects of medication. This is different than Palliative Sedation Therapy.

4. Palliative Sedation Therapy is an emerging therapy used in the last days when death is imminent and when symptoms are not able to be controled by other means.  Medications are provided to manage the symptoms and the person is deeply sedated through to time of death.  Guidelines for Palliative Sedation Therapy are being developed. This is not the same as sedation that results when a person’s symptoms are being managed, and person is drowsy as a side effect (as above).

5. Physician Assisted Suicide is when a person requests assistance in dying.  They may do this because they have a terminal illness and are not sure that they will be able to carry out the suicide without assistance.  This is legal in a few states.  If this become legalized in Canada, guidelines will outline the procedures to follow.

6. Euthanasia is when people are terminated without their request.  Over the years there has been concern expressed about the “slippery slope”, concern that people who do not ask for assisted suicide will be euthanized.  Groups that are particularly concerned about this are those who protect the rights of peple with disabilities, the elderly, and other vulnerable populations.

7. Finally, there are people who wonder if Hospice Palliatiave Care is a form of Physician Assisted Suicide.
Hospice Palliative Case is all about improving the quality of living: It is not about hastening death.
In Physician Assisted Suicide, medication is given to terminate a life, to achieve death: In Hospice Palliative Care, medication is given to provide comfort, to achieve comfort. There is a difference.  On a practice level there is a difference.

The proponents of Physician Assisted Suicide and the philosophy and goals of Hospice Palliative Care share some similarities.  Both desire to provide, or help provide a death with dignity.  It is inaccurate for the media to portray that death without Physician Assisted Suicide is not dignified.

This quote from the Canadian Hospice Palliative Care Association is appropriate:

“In the hospice palliative care experience, the process of dying has meaning and purport for the person as well as his or her loved ones. As a field of practice, we have the responsibility to ensure that all those involved in providing hospices palliative care have the knowledge (including an understanding of the alternatives to physician-assisted suicide), attitude and skills to help people at end-of-life manage both physical and emotional suffering, and to support family members. We also have a responsibility to ensure that patients seeking physician-assisted suicide are aware of other options.”

For further information, discussion paper of issues related to Physician Assisted Dying, and defintions of terms

What terms do you feel need to be defined or clarified?

Kath

Physician Assisted Suicide – CHPCA issues paper

I am including the link to the Canadian Hospice Palliative Care paper that summarizes the issues and discussion for and against PAS.

It is meant to inform and encourage discussion of this topic among hospice palliative care providers, as well as the public. It offers a foundation of facts from which its members and others may draw upon when discussing the issue of euthanasia and assisted dying.  http://www.chpca.net/media/7835/PAD_Issues_Paper_-_April_24_2010_-_Final.pdf