Should doctors be required to inform patients of their palliative care rights?

I overheard a colleague admit an 84-year-old woman to the hospital from the emergency department for a sizable mass in her uterus — no doubt, cancerous. I pictured a frail woman who’d been suffering for a while and was afraid to tell anyone about it, fearing the worst.  Like most, she preferred to ignore it rather than have others tell her what to do. Having fallen ill, she risked losing the ability to make her own medical decisions.  Medical specialists will now decide what her options are and default to the best interest of saving her life. Sadly, she’ll likely become another victim maligned by the healthcare system and then laid to rest.

Is this the best practice of medicine? Are public health policies complicit in allowing physicians to abuse elderly patients? Was palliative care an option for this patient while in the ED? Was she read her palliative care rights? Oh, wait — patients are usually not allowed to know about palliative care until all medical treatment has been exhausted — as per doctor’s orders.  We’ve all witnessed doctors abusing their power by sentencing an innocent victim to a fate worse than death without a proper hearing.

A proper hearing involves listening to both sides — medical and palliative care — being represented at the first indication of life-threatening illness. This open-ended, unbiased conversation must become the responsibility of the diagnosing physician. Patients with chronic or serious illness who are treated in the ED need to be provided palliative care information and resources. Like domestic violence, child abuse, and suicide prevention, end-of-life issues are matters of health and human services — not business as usual.

What are your palliative care rights?

  1. You have the right to sleep in your own bed tonight — without being disturbed or afraid of dying.
  2. You have the right to let others manage your pain, nausea and difficulty breathing — with compassion.
  3. You have the right to forget your past, present and future medical problems and resume living to the best of your ability.
  4. You have the right to have others lift your spirit and allow you to be stress free.
  5. You have the right to pursue your “beginning of the end” naturally with humility, dignity.

Patients and their caregivers need to understand the personal benefits of palliative care. Most feel it’s only appropriate when all else fails and think of it as hospice. While palliative care is frequently provided by hospice organizations, it aligns better with home care services. Medicare recipients might understand the inherent risk of entitlement and need to learn how to refuse unnecessary medical intervention. Palliative care agencies provide patients a “get out of jail free” card that needs to sit alongside the Medicare card in their wallets.

Are palliative right for you?

A physician’s moral code of ethics follows the Golden Rule – do unto others as you would have them do unto you. Patients are not always aware of how doctors might care for themselves. Many patients would prefer to not emulate intimidating, die-hard physicians. But when push comes to shove, we all prefer a good friend/kind soul to sit down with us and explain our options. Most patients are often coerced to toe the line and follow the doctor’s orders.

Personal freedom and patient autonomy are neglected unless treatment choices are provided without bias and the threat of death.  Patients need to understand that there’s no wrong choice in deciding to live or let die. But’s it’s wrong to go against their personal wishes and suffer fates worse than death.

Palliative care respects personal choice and honors final wishes. Do physicians want this for themselves? Can they become better advocates of palliative care? Should they be required to inform patients of their palliative care rights?

Kevin Haselhorst is an emergency physician and author of Wishes To Die For: Expanding Upon Doing Less in Advance Care Directives.  He can be reached at his self-titled site, Kevin Haselhorst

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