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A bedside lamp warm against the early dark, a window looking out toward Lake Superior at the foot of the bed. Member's home, Hawthorne neighborhood — last week's visit, lakeward window.

Minute 03 — Why a small primary-care practice runs this lane

Most members of any primary-care panel will eventually die in the care of their primary-care clinician's referral network. Whether the dying happens in the panel — with the clinician who knows the member's name, family, dog, and hobbies — or whether the dying happens with strangers in a hospital corridor is largely a function of how seriously the practice takes this lane. We take it seriously. This is the smallest lane on the panel by active count and the longest in years per encounter.

The framework we use is the Center to Advance Palliative Care's primary-palliative-care competencies and the National Hospice and Palliative Care Organization's standards. We are primary-care clinicians, not hospice physicians; we know our scope. The job is to know it, to keep it well-coordinated with the people whose scope is broader, and to be honest with our members about when we are at the edge of ours.

Year 00 — Advance directives, in plain English

We invite every member of the panel — not only the elderly, not only the chronically ill — to a one-hour advance-directives visit. The visit is included in the membership. The product of the visit is a written health-care directive in Minnesota's statutory form (the practice keeps a stack of them; the Minnesota Department of Health publishes the form and we use it directly), naming a health-care agent, listing values and preferences in the member's own words, and addressing the standard sections (life-sustaining treatments, nutrition and hydration, organ donation, body disposition).

We ask members to update the directive every five years or after any major life change. We keep a copy in the chart and we encourage the member to give a copy to their named agent and to the hospital where they would expect to be admitted. Five Wishes is one supplementary tool we use when members find the statutory form too dry for the values conversation.

Indicator — When a POLST is the right next step

For members with a serious advanced illness — a clinician's reasonable answer to "would you be surprised if this person died in the next twelve months" being "no, I would not be surprised" — we move from the advance directive (a values document, prospective) to a POLST (Provider Orders for Life-Sustaining Treatment), which is a portable medical order, signed by the clinician and the patient, that travels across care settings. Minnesota's POLST form is signed in our office and uploaded to the chart; the bright-pink original goes home with the member.

Phase 01 — Palliative referral, early not late

Palliative care is not hospice. The single most consequential change in the last fifteen years of palliative-care practice is the recognition that early palliative-care referral, alongside disease-directed treatment, improves both quality of life and — in some cancer trials — survival1. We refer to Essentia Health's palliative-care service early in the trajectory of any member with a serious chronic illness — not as a "we're giving up" handoff but as a co-management arrangement.

Phase 02 — Hospice referral, when the prognosis fits

Hospice is for members whose prognosis is six months or less if the disease runs its expected course, and who have decided to focus on comfort. We refer most often to St. Croix Hospice's Duluth office and to Solvay Hospice House, the inpatient hospice on Beverly Street. Both are organizations we have worked with for more than a decade. The referral is a phone call, not a portal.

We do not stop seeing the member when hospice is on board. We attend the interdisciplinary team meetings as a participating provider when our schedules allow. We take the member's family's calls.

Last fortnight — House calls within city limits

For members enrolled in hospice and in their last weeks at home, Marek does house calls within the Duluth city limits. Generally one visit per week; more often if the trajectory warrants. The visit is included in the membership; there is no charge. The visit is, on most days, the slowest visit of the week, by design. We sit. We do not hurry. We bring the dog when the family asks for it.

After — Bereavement

The clinician sends a handwritten card to the family within the first week. We attend the funeral when invited and our schedule allows. We offer a follow-up visit to the surviving spouse or partner — included in the membership for that surviving member if they are themselves on the panel — six to eight weeks after the death, primarily to check on grief and on the practical business of solitary living. We do not charge for this visit, and we do not bill it; it is the closing of the lane.

Cross-references: this lane meets 01 · Cardiometabolic at the heart-failure trajectory; 03 · Mental health at the existential-distress edges and at family bereavement; and 02 · Musculoskeletal at the at-home mobility-and-comfort questions of the last weeks. The transcript "Notes on listening" is the long-form essay version.

References

  1. Temel JS, et al. (2010). Early palliative care for patients with metastatic non–small-cell lung cancer. NEJM, 363(8), 733–742. nejm.org
  2. Kelley AS, Morrison RS. (2015). Palliative care for the seriously ill. NEJM, 373(8), 747–755. nejm.org
  3. National POLST. polst.org
  4. Minnesota Department of Health — Health Care Directive form. health.state.mn.us
  5. Atul Gawande. (2014). Being Mortal: Medicine and What Matters in the End. Metropolitan Books. macmillan.com
  6. Center to Advance Palliative Care. getpalliativecare.org