A Saskatchewan woman, Jolene Van Alstine, says she is considering Medical Assistance in Dying (MAID) because she cannot access the specialized surgery her rare medical condition requires.
For the past eight years, Van Alstine has lived with a rare form of parathyroid disease known as normocalcemic primary hyperparathyroidism (nPHPT), which has caused persistent extreme bone pain, nausea, vomiting, and severe functional impairment.
Normocalcemic primary hyperparathyroidism is a subtype of parathyroid disease in which parathyroid hormone (PTH) levels are elevated, but blood calcium levels remain within the normal range. In typical primary hyperparathyroidism, high PTH causes elevated serum calcium. In nPHPT, this imbalance reflects a dysfunction of the parathyroid glands despite normal measured calcium. The parathyroid glands regulate calcium and phosphate, key minerals for neurological function, bone strength, and kidney function.
Patients with this condition commonly experience:
Bone pain and reduced bone density
Nausea and gastrointestinal distress
Fatigue and cognitive symptoms
Muscle weakness and bone fragility
Because diagnosis is based on elevated PTH without hypercalcemia, nPHPT can be missed or delayed, often requiring careful endocrine evaluation.
Van Alstine has undergone three surgeries previously to address parathyroid overactivity, but she still requires further specialized surgery to locate and remove the remaining overactive gland.
Van Alstine needs a referral to a surgeon who can perform the specialized parathyroidectomy, the surgical removal of overactive parathyroid tissue. However:
No surgeon in Saskatchewan is available to perform the surgery.
She cannot obtain an out-of-province referral because endocrinologists in Saskatchewan are not accepting new patients.
Without surgical access and in chronic pain, Van Alstine has applied for MAID. She was initially informed that she met criteria for MAID — including a serious, incurable condition with intolerable suffering and loss of function and had one approving physician. However, as of her latest update, she had not yet received full approval from the second required independent assessor.
Van Alstine told CBC that although she would prefer treatment and not need MAID, she wants the option open until surgical care becomes available.
On Nov. 26, Van Alstine and her partner, Miles Sundeen, met with representatives at the Saskatchewan Legislature supported by NDP Opposition MP Jared Clarke, who called on Health Minister Jeremy Cockrill to help secure surgical care, saying, “Nobody should be forced to choose between unbearable suffering and death.”
The Ministry of Health confirmed that a meeting took place but declined specifics on individual care due to patient confidentiality.
In Canada, patients seeking MAID must be assessed by two independent qualified practitioners and meet criteria including:
A grievous and irremediable medical condition
Serious suffering that the patient perceives as intolerable
Informed consent without external pressure
The natural death need not be reasonably foreseeable in some cases
Van Alstine’s initial assessment by one physician met these criteria, but full approval pending a second assessment remains incomplete.
Patients with parathyroid hormone dysregulation can experience bone weakening and musculoskeletal pain due to PTH’s effect on bone metabolism. Standard care often includes:
Surveillance for mild/asymptomatic cases
Vitamin D and calcium optimization
Surgical intervention (parathyroidectomy) when symptoms are significant or complications arise
In Van Alstine’s case, the inability to access a specialist surgeon who can perform a targeted parathyroidectomy, potentially using intraoperative PTH monitoring and imaging has prevented resolution of the disease’s underlying cause. Chronic parathyroid conditions that persist despite surgery can result in long-term pain and reduced quality of life.
Jolene Van Alstine’s case highlights the intersection of a rare endocrine disorder, access challenges in specialized surgical care, and the extreme personal decision of seeking MAID in the absence of effective treatment.
Canada’s single-payer health-care system is designed to provide universal access, but its structure also means patients cannot turn to a parallel private system when public-sector wait times or specialist shortages create barriers to care.
In cases involving rare conditions that require highly specialized expertis limited provincial capacity can leave patients with no timely alternatives within Canada.
(Rh/TL)
