One of the difficulties of commenting on the impact of legislation here, in comparison with elsewhere, is that Specialist Palliative and Hospice Care in the UK is that we rank as the best in the world. It is highly developed and what we define as hospice care will have little or no resemblance to that elsewhere. Consequently, claims from the countries with legislation around physician assisted suicide or euthanasia that palliative care has been unaffected or may have improved may be true for them. That does not make it true for us. The recent experience in Canada, which has pockets of very high quality palliative and hospice care that we would recognise as comparable to the UK, bears this out.
The APM continues in direct conversation with clinicians in Canada from both sides of the divide to try and understand the implications for us. One major proponent MAID (medical assistance in dying, that includes euthanasia) came from palliative care and is zealous in his perspective. He has presented to a lobbying Parliamentary Group in Westminster recently. Others have many concerns.
Apart from the authors above along with Harvey Chochinov and Mike Harlos. Others have expressing worries that are widespread and many would rather remain anonymous because of the impact speaking out may have on them personally. Below is a distillation of some anonymised comments we have on record.
Focus on how to support the ongoing provision of palliative care services regardless of whether MAID is also being considered by the patient.
The broad philosophy of palliative care (as described by the WHO or the recently-revised IAHPC definition) can be challenging to implement within the constraints imposed by the realities of health care service provision. This was highlighted early on when MAID became available – many palliative care practitioners expressed strong philosophical opposition – that assisted death represents the antithesis of the philosophy of palliative care.
I recall a Medical Director colleague from another city saying that he will never allow MAID to occur on “his unit”. The reality is that he was powerless to prevent it; his only option would be to resign as director. Although I could never see myself providing MAID, I felt that it was important for me to support our palliative care team in approaching this new development in health care.
Even if the palliative care community maintains that there should be no connection between palliative care and MAID,
- it is impossible to deny the overlap between those whom palliative care aspires to support and those who are eligible for MAID.
- Our federal legislation requires a “grievous and irremediable medical condition” and that “their natural death has become reasonably foreseeable” – this essentially paraphrases most palliative care program criteria, and the connection is pretty much legislated.
In my experience, the following issues/challenges stand out as having been significant for our palliative care team:
Health care providers wishing to avoid involvement in MAID (conscientious objection)
For the most part there is support for clinicians who oppose involvement for religious or moral/ethical reasons. However, the framework for addressing conscientious objection is a combination of legal requirements outlined in the legislation as well as the statements/guidelines of the practitioner’s regulatory body (medicine, nursing, pharmacy, social work).
We have had many of our team members express opposition to any connection MAID; unfortunately, it seems rare that these same clinicians will take the time to inform themselves about the issue, such as reading the legislation, the requirements of their own regulatory body, and literature regarding ethical considerations around conscientious objection.
Faith based facilities, as you would imagine, have also had their own unique struggles.
- some allow an initial assessment to take place within their facility,
- none allow the MAID procedure itself to take place there, which means the patients must be transferred elsewhere.
- While this seems a reasonable solution, there have been instances where this has caused patients great suffering i.e the ambulance ride itself has caused tremendous pain and required extensive analgesia (not to mention the disruption for patients and families at this most vulnerable time).
Palliative Care programs will need to develop an approach to meeting patients’ needs and ensuring compliance with legal and regulatory requirements around MAID, while still supporting clinicians who object.
- Our provincial medical regulatory body requires that even if physicians object to MAID, they must at minimum provide information outlining how to contact the MAID providers
- In our program we have physicians who feel that they cannot even meet this minimum requirement; rather than make this an issue, I have let them know to contact me and I will do so.
Ongoing education and support is needed for the team about these complex ethical and moral issues.
- Some might feel that even in just providing palliative care support to a patient who is awaiting the MAID procedure, they are complicit in the process.
- Ongoing meetings and discussions to help the team compartmentalize how they view their involvement is important.
Palliative Care clinicians feeling they have failed in addressing a patient’s suffering if the patient chooses MAID
This is a very real challenge. The data locally indicates that
- virtually none of the patients seeking MAID are doing so because of uncontrolled symptoms.
- it is a desire for autonomy and control.
- Reaffirming this with our palliative care team has been helpful – i.e. the patient is not seeking MAID due to the failure of the nurse or physician.
Palliative Care team members feeling upset when they were unaware that the patient was pursuing MAID (they sometimes find out after the fact).
We have had situations where the patient does not feel comfortable sharing their intentions to receive MAID. This may be concern
- that they will be judged, or
- their ongoing care might be compromised, or
- that people will try to talk them out of it.
- This can leave the palliative team member feeling hurt, or even betrayed.
- It can also have implications for our program functioning and scheduling as well, as we have had community palliative nurses show up at a patient’s house after a weekend, only to find that the patient had received MAID over the weekend.
We have worked with the MAID providers to
- keep us informed when needed for our own provision of clinical care.
- We have also worked with our team to reinforce the patient’s right to privacy.
Clinicians uncertain how to respond to comments from the patient about a desire for death.
Prior to MAID, palliative care clinicians were generally comfortable and skilled at exploring comments such as “I just wish this was all over”, or “I wish that I could go to sleep and not wake up again”, or “Why can’t you just give me something to end this – we treat animals better than this”.
- We approached such comments by exploring the underlying suffering, and looking for ways to provide support.
- Now that MAID is on the landscape, we might forget that we still have a role in exploring suffering
It can also be difficult to know if the patient is actually asking about MAID, or simply expressing an exasperation with existence.
- It doesn’t go over well to connect someone with the MAID providers if what they were really wanting for was help for their loved ones who are not coping well.
- let’s not let a request for MAID suggest that we still don’t have a responsibility to try to understand and address the patient’s suffering.
- A resource used in Canada is here
In our jurisdiction we have challenges related to faith-based facilities being exempt from the provision of MAID. This has had significant implications for patients who are in designated palliative care beds within those facilities.
The routinisation of MAID
If there have been any surprises for me, it is how quickly this has become so normal and even routine. Locally
- MAID is not administered under the auspices of Palliative Care;
- palliative care, after all is about addressing the patients quality of life, while MAID is about ending life … the distinction in my mind is very clear.
That said, the fact that it has so quickly become part of mainstream medicine is not something I had not anticipated, nor feel particularly comfortable with. As a psychiatrist, I understand the importance of presence and how powerful that can be in supporting patients and their families. It is hard for me to reconcile that approach with a stance that would see me having to participate in hastening the patient’s death.
Criteria seem uncontrollable & safeguards ineffective
In Canada the main MAID criterion is ‘death being reasonably foreseeable’.
- Quebec has its own legislation which limits MAID to ‘end of life’,
- the rest of the country grapples with how to interpret reasonably foreseeable and the
- variability of interpretation is vast (from less than six months to years).
But opening the door on MAID has also meant that there are proponents who continue to push for expanding the criteria (you may find the report regarding advance directives, mature minors and psychiatric justification alone of interest);
I hear of virtually no one contemplating restricting the criteria as they currently stand. My sense is that public support for MAID is broad, and like the observation in have seen in medicine, is perceived to now be quite routine; I’ve even seen quite a number of obituaries that openly acknowledge and thank the MAID team for their involvement in the persons death. While I remember observing this outlook of ‘normalcy and routine’ when I visited The Netherlands, I never imagine that Canada would so quickly follow in suit.
I remember one physician in Holland saying that PAS was not a medical issue but a societal issue; and another American physician describe it as ‘an act of love’. Either way, I think both were saying that fall outside of usual medical practice. I understand that for some people, this will be a compelling choice no matter what palliative interventions are offered or available.
As a society, we need to determine if this is a choice they should be entitled to; here in Canada, the decision to provide Canadians that choice came about as a result of a Supreme Court decision, followed by federal legislation passed by Parliament in February 2016.
A very separate choice is who should be responsible for providing PAS/MAID. Like you, I too argued that it is best situated outside of medicine with judicial oversight. The role of medicine, as you point out should include diagnosis, prognosis – but let us not forget our duty to address suffering (the article by Dr Harlos makes that point well). And if medicine must take this on, it should only be by those who are specifically licensed to do so, with appropriate oversight and adherence to the Vulnerability Standards.
Concerns about the impact on Palliative Care in Canada are here and here
That Palliative care is unaffected by legal change is supported here and disputed here
- A change in the law to legalise PAS will inevitably call for involvement from palliative care physicians and hospice services.
- Evidence from Oregon and Washington suggests the vast majority of individuals who request PAS are hospice patients.
- Participating Hospices will be required to develop new practices and respond to requests from patients for PAS.
- Hospices that permit PAS must accept the risk of institutional stigmatisation and damage to their caring reputation.
- The risk to hospice healthcare practitioners must be considered, including the emotional burden, strained professional relationships and possible legal repercussions where a decision is disputed.
- Clinicians could feel pressured from within their organization to cross their own moral boundaries following a request for PAS if such a service is commissioned.
- Counselling patients and their families with regard to PAS has been shown to be time consuming. A single assessment is likely to be insufficient to fully evaluate and address the needs of a person requesting PAS.
- Scarcity of palliative care clinicians in rural areas may lead to patients moving areas to access PAS from services that have not had time to develop a relationship with the patient.
- Not all patients who proceed with PAS die quickly. Hospices will need to develop clear and ethical guidance for how to manage a patient who does not die after taking the prescribed medication.
- If a hospice agrees to be involved with PAS, a significant number of employed and voluntary workers may retire or resign.
- Funding and development of hospice and community palliative care services may be reduced with resources diverted toward service provision and administration of PAS.