Chapter 30: Dying, Death & Grieving in Mental Health

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Welcome to the Deep Dive.

Today we're getting into a topic that's really intimate, definitely necessary, and honestly professionally challenging sometimes.

Dying, death, and grieving.

Our goal here is to kind of pull out the key framework from a core nursing text, so you can walk away feeling, you know, pretty solid on the ethics, the different care models, and importantly the communication needed at the end of life.

We're kind of grounding this in a quote from Paul Kalanithi, you know, the surgeon who wrote that amazing book.

He said, even if I'm dying until I actually die, I am still living.

And that really sets the tone, doesn't it?

It's about living right up to the end.

It really does.

And the idea is, well, it's become so much more important because death itself has changed so much in, say, the last century or so.

Just think, back in 1900 in the U .S., life expectancy was, what, 47.

And people mostly died from infectious diseases.

It happened fast, usually at home.

Wow, 47.

That's hard to imagine now.

Exactly.

Now it's nearly 79.

And it's chronic stuff, heart disease, cancer, Alzheimer's.

These things take time.

So death isn't usually sudden anymore.

It happens in hospitals, nursing homes, clinical settings.

Most people, honestly, they don't really see death up close anymore.

And because it's unfamiliar, having these clear nursing frameworks, well, it's absolutely crucial.

That's a great point.

We've sort of outsourced dying and all that clinical ability, the technology we have now that brings its own set of problems, right?

Like ventilators, feeding tubes, ways to keep the body going long after it might have naturally stopped.

So we're always asking, you know, how far do we go?

When is it too much?

Precisely.

The default in medicine is often cure, keep going, extend life.

But that can clash with what the patient actually wants, which might just be comfort, which is why the text we're looking at is so careful to lay out the two main models for end -of -life care.

Let's start with hospice care.

Okay.

Hospice.

Since Leisandre's 1967, I remember that.

What are the absolute must -know criteria for to qualify for hospice?

Right.

So two main things.

First, the patient has to choose comfort over cure.

They stop treatments aimed at curing the terminal illness.

Second, a doctor needs to certify that, in their best judgment, the patient has six months or less to live.

And remember, hospice isn't necessarily a building.

It's a philosophy, a team approach, doctors, nurses, social workers, chaplains supporting the patient and the family.

Symptom relief, yeah, but also, as spiritual stuff, social needs.

Got it.

Team approach, comfort focus, six -month time frame.

Okay.

So then, what about palliative care?

People mix these up all the time, so I'm trying to remember the difference for, say, a test.

What's the key takeaway?

The biggest difference is timing.

Palliative care is also about comfort, quality of life, managing suffering.

But crucially, it can start right when someone gets diagnosed.

And it can happen at the same time as curative treatments.

Ah, okay.

So you don't have to give up on chemo or other treatments to get palliative care.

Exactly.

It's about adding a layer of support for all kinds of needs.

Physical, emotional, spiritual, right from the beginning, not just at the very end.

That makes sense.

Palliative care is like comfort plus hope, maybe.

Now, if someone is in hospice, you mentioned Medicare covers different levels of care.

Can you quickly run through those?

Sure.

Four main levels.

Most common is routine home care care provided wherever the patient calls home.

Then there's continuous home care.

That's for short periods when symptoms get really bad, needing more intensive nursing support at home, like eight to 24 hours a day.

Third is inpatient respite care.

This is huge for families.

It gives the main caregiver a short break, maybe up to five days, with the patient going to a facility temporarily.

A break for the caregiver?

That's vital.

Absolutely.

And finally, general inpatient care.

This is for managing severe symptoms that just can't be handled at home.

So short -term admission to a hospital or hospice facility until things are stable again.

Right.

So different levels for different needs.

But underlying both hospice and palliative care, it's all about dignity,

patient choice,

autonomy, which naturally leads us into how we actually define death, legally and conceptually.

And that opens up a whole can of worms, ethically speaking.

We probably have to start with Dr.

Elizabeth Kubler -Ross and her stages are so well known.

Yeah.

Her five stages really gave us a way to talk about how people react to knowing they're dying.

First up is usually denial and isolation.

Kind of acts as a buffer, you know, protects people initially.

This might be when you see someone doctor shopping, trying to find a doctor who gives them a different, better diagnosis.

Right.

Looking for a way out.

And then denial starts to fade.

Anger.

And it can be, well, everywhere aimed at doctors, nurses, family, God, whoever.

It's tough for staff because it feels personal.

But the text really stresses, you need to give space for that anger.

Understand it's not about you.

Don't push back.

Easier said than done sometimes, I bet.

Okay.

After anger.

Comes bargaining, trying to make deals, usually privately with a higher power.

If you just let me live until my grandchild is born, I'll that kind of thing.

Trying to regain some control.

Then depression.

Kubler -Ross talked about two types,

reactive depression, about losses that have already happened, like losing a job or physical abilities,

and preparatory depression, which is grieving the losses yet to come.

The key here is allowing that sadness.

Trying to cheer someone up often isn't helpful.

They need to process it.

Just being present with them in their sadness.

Exactly.

And finally, acceptance, which isn't necessarily happy.

It's more like a quiet piece.

Less struggle.

Sometimes people want to be alone more at this stage.

Oh, okay.

So those are the emotional responses.

But then we hit the heart legal definitions.

How do we draw the line medically?

We hear about brain death versus a persistent vegetative state, PVS.

Right.

And the distinction is critical.

Brain death is the irreversible loss of function of the entire brain, the cerebrum, and the brainstem.

That's the legal definition of death in the US.

Irreversible loss of the whole brain.

Got it.

How is PVS different?

In PVS, the brainstem might still be working.

So the heart beats, the lungs breathe, maybe with support, maybe not.

But the higher brain function, the cerebrum, is severely damaged.

There's no awareness of self or the environment.

And for it to be persistent, this state generally has to last more than a month.

These definitions really came into focus with cases like Karen and Quinlan back in the 70s.

Right.

Those landmark cases really forced these discussions.

And that brings us right to one of the most difficult areas.

Artificial nutrition and hydration, or ANH.

Tubes for feeding, IV fluids.

Our gut reactions offer, well, food and water are basic care, right?

Not medicine.

Yeah.

It feels fundamentally different.

But legally.

Legally, ANH delivered through tubes or IVs is considered a medical intervention, not basic comfort care.

And why is that legal label so important for nurses and families?

Because the Patient Self -Determination Act gives patients or their designated decision maker the right to refuse any medical intervention.

That includes ANH.

We have to help families understand that when someone is actively dying, their body is shutting down.

Not wanting to eat or drink is usually a symptom of dying, not the cause of it.

Okay, that's a huge reframing.

The body doesn't need the fuel in the same way.

Exactly.

And forcing fluids, artificial hydration, can actually make things worse sometimes.

It can lead to swelling, edema, breathing problems, nausea.

Comfort often comes from good mouth care, ice chips maybe, not necessarily IV fluids.

That clarity is so important when talking to families.

Okay, now,

the really tough one.

Intentionally ending life.

The terms here matter a lot.

Euthanasia versus Legally Assisted Death.

LAD.

What's the difference?

Okay.

Euthanasia is when someone else performs the act that causes death, like giving a legal injection.

It can be voluntary, patient requested it, passive, withholding treatment, or involuntary, patient didn't consent.

Legally Assisted Death, LAD, on the other hand, is when a medical professional provides the means, usually medication, but the patient takes it themselves, they self -administer.

Notice the shift away from calling it Physician Assisted Suicide.

The newer term, LAD, tries to reflect that the person is already terminally ill.

Right.

The underlying condition is the cause, the patient is just controlling the timing.

And this is where nurses face a huge ethical conflict, isn't it?

You have the principle of autonomy,

the patient's right to choose, crashing right into non -maleficence, do no harm.

And beneficence, do good.

Core parts of nursing ethics.

How does the American Nurses Association, the ANA, handle this?

It's incredibly difficult.

The ANA has actually shifted its position over time.

It used to be strongly opposed, now it's more neutral regarding the patient's right to explore LAD as an option.

However, the ANA code of ethics still prohibits nurses from actually administering the lethal medication.

So the nurse's role is to be informed, objective, support the patient's decision -making process.

Right.

But they can't be the one to, say, push the syringe?

And nurses also have the right to conscientiously object to participating at all, as long as patient safety isn't compromised.

Wow.

Okay, that's a complex line to walk.

Shifting gears a bit, let's talk about the practical, everyday work nurses do before things get to that point.

Advanced care planning.

ACP.

The text says it's not just about filling out forms.

Why?

Because the process is therapeutic.

ACP is about having conversations, ideally long before a crisis, about what matters to the patient.

Their values, goals, fears, what they want their end -of -life experience to look like.

And the research is pretty clear.

When families have had these talks, the designated decision -maker feels much less anxiety, depression, and stress when the time comes to make tough choices.

ACP protects the family, too.

So it's really preventative mental health care for the survivors.

And the outcomes of ACP are the advanced directives.

What are the two main parts of those?

Two key documents, usually.

First is the durable power of attorney for health care, DPOA.

That's where you name the person you trust to make medical decisions for you if you can't speak for yourself.

Your health care proxy or agent.

Naming your person, what's the second part?

The living will.

This is your personal statement about the kinds of treatments you would or would not want, like views on mechanical ventilation, feeding tubes, things like that.

It guides your DPOA and doctors.

And crucially, these only kick in if the patient is incapacitated, right?

Correct.

As long as you can make your own decisions, you do.

Okay.

Then there are those forms nurses see all the time on charts.

Pulse or molest or mold the ulst.

Provider orders for life -sustaining treatment or medical orders.

These are actual doctor's orders, right?

Based on code status.

Exactly.

Pulse -molest forms translate patient preferences from advanced directives into actionable medical orders.

They're usually brightly colored, say with the patient across care settings.

They cover things like CPR, medical interventions like intubation or feeding tubes, and antibiotics.

And they specify the desired code status.

Let's clarify those code statuses, especially the ones that sound similar.

We know full code means do everything possible.

What are the DNR variations?

Right.

Do not resuscitate.

DNR is the basic order.

No CPR if the heart stops or breathing stops.

But then it gets more nuanced.

DNR, Comfort Care Only, DNR -CCO is the most focused on comfort.

It means relief of pain and suffering is the only goal.

No CPR, no intubation, often limiting other medical interventions unless they're purely for comfort.

Comfort is the absolute priority there.

What about DNR Comfort Care Arrest?

DNR -CCA?

That sounds confusing.

It can be.

DNR -CCA means you provide full medical treatment, including potentially aggressive care, up until the moment the patient has a cardiac or respiratory arrest.

But if they do arrest, then you stop.

No CPR, no resuscitation attempts at that point.

The Comfort Care part kicks in fully upon arrest.

Treatment continues until the arrest itself happens.

That's a key difference.

Thanks for clarifying.

Now, when someone is actively dying, the text talks about the art of presence.

That sounds profound, but maybe a bit scary for a new nurse.

How do you actually do that?

How do you talk about death without fear?

It's about showing up, really.

Being fully present.

Not necessarily talking a lot, but listening deeply.

Observing.

Being okay with silence.

It means putting your own discomfort aside and focusing completely on the patient's experience.

Using open -ended questions helps center them.

Like what?

Can you give an example?

Sure.

Simple things like, tell me what this is like for you right now, or what are you hoping for?

Or even just, how are you doing, really?

It invites them to share their reality without judgment.

Just being genuinely curious and open.

Exactly.

And alongside presence, there's the critical job of symptom management.

Pain is often called the fifth vital sign in this context, and treating it effectively is paramount.

But here's a really important clinical point the text makes.

Don't automatically assume every new symptom is just the disease progressing.

What do you mean?

Well, if a patient suddenly becomes confused or very agitated or super lethargic, yes, it could be the dying process.

But you must first rule out other potentially reversible causes.

Like what?

Like dehydration, a urinary tract infection, UTI, constipation, medication side effects, electrolyte imbalances.

Treating one of those could significantly improve their comfort and clarity, even if briefly.

Don't just write it off as end stage.

That's huge.

Always look for the treatable first.

Yeah.

Okay, now about pain meds, specifically opioids.

Families get scared.

They hear opioids and think addiction.

And that fear is completely understandable given everything we hear about the opioid crisis.

But the nurse's job here is crucial reassurance and education.

For a person who is dying, addiction is simply not the concern.

The goal is quality of life.

It's relieving suffering.

We have to be strong advocates for using opioids appropriately and effectively to manage pain at the end of life.

So advocating for comfort over unfounded fears of addiction.

Got it.

Before death occurs, families often go through anticipatory grief, right?

Grieving the loss before it fully happens.

Yes, absolutely.

It's mourning the future you won't have with that person.

It can involve sadness, anger, anxiety, but also things like life review, saying goodbye, trying to mend relationships.

It's what happens after the death, understanding grief itself.

The text lays out three key terms, grief, bereavement, and mourning.

How do they differ?

Okay, so grief is the internal experience.

It's the personal holistic response to the loss, emotional, physical, cognitive, spiritual.

It's what you feel inside.

Bereavement is the state of having lost someone.

It literally means to be robbed.

It's the objective situation, the period of time after death.

And mourning is the outward expression of grief.

It's the shared social rituals and behaviors, things like funerals, wearing black, support groups.

It's how grief goes public.

Internal feeling, the state of loss, and the external actions.

Got it.

Now, theories about how people grieve have moved on from just Kubler -Ross's stages, haven't they?

Definitely.

We now think of grief more as active work.

Yeah.

Morden, for example, talked about four tasks the bereaved need to accomplish.

Tasks, like a checklist.

Not quite a checklist, more like processes.

First, accept the reality that the person is dead.

Second, process the pain of the grief actually feel it.

Third, adjust to a world without the deceased.

And fourth, find a way to maintain a connection to the person while still moving forward with life, kind of relocating them emotionally.

Adjusting and relocating.

That sounds active.

And then there's the dual process model, which feels very real world.

It suggests that involves oscillating, kind of swinging back and forth between two things.

On one hand, there's loss -oriented stuff, focusing on the dead person, crying, missing them.

On the other,

restoration -oriented stuff, dealing with practical life changes, developing new identity, doing new things.

You bounce between both.

Yeah, that sounds more like how life actually works, not just linear stages.

But sometimes grief does get stuck, right?

It becomes complicated.

The text mentions persistent bereavement disorder, PCBD.

What's that?

Right.

PCBD is something the DSM -5, the diagnostic manual, has marked for further study.

It's basically when that intense, acute grief just doesn't ease up over time.

We're talking grief symptoms that are still severe and debilitating more than 12 months after the loss in adults, causing real problems with daily functioning.

It involves intense yearning, preoccupation with the deceased, plus a cluster of other specific symptoms related to distress and identity disruption.

So, way beyond what's considered typical grieving.

Yes.

And then there's another type of complicated grief, disenfranchised grief.

This is when the loss isn't seen as legitimate or significant by society.

What kind of losses would fall into that category?

Oh, many kinds.

The death of an ex -spouse, maybe?

A secret lover.

A pet, which can be devastating, but some people don't acknowledge it.

Loss due to abortion or miscarriage.

Even the death of someone you had a difficult relationship with, like an abuser.

Because society doesn't really give permission to grieve these losses openly, people often don't get the support or rituals they need, which makes healing much harder.

That makes sense.

The isolation must be intense.

So, as nurses or just as humans supporting someone grieving, communication is key.

The text specifically warns against using cliches.

What kind of phrases should we definitely avoid?

Oh, the classics that often do more harm than good.

Things like, they're in a better place now, or God needed another angel, or at least they didn't suffer, or be grateful for the time you had.

Why are those so bad?

They sound nice.

They often shut down the griever's actual feelings.

They minimize the pain or try to put a positive spin on something that feels utterly devastating.

It tells the person their grief isn't okay.

Okay, so avoid the platitudes.

What should we say or do?

Acknowledge the pain.

Use empathetic statements.

Things like, this must be so incredibly painful for you, or I can only imagine how much you're missing him right now.

And instead of saying the vague, let me know if you need anything, make a concrete offer.

Can I bring over dinner on Tuesday?

Or, would you like me to walk the dog for you this week?

Something specific they can say yes or no to.

Be present.

Acknowledge the pain.

Offer concrete help.

Okay,

so let's try to wrap this up.

Key takeaways from our deep dive today.

We really nailed down the difference between hospice comfort focus, usually six months or less, stopping curative treatment and palliative care, which is comfort, alongside curative treatment, starting anytime.

Yep,

and the huge importance of advanced care planning those conversations,

leading to advanced directives like the DPOA for health care and the living will.

Plus understanding those pulse mulsed orders, especially DNRCCO versus DNRCCA.

We also hit on the nurse's vital role.

That art of presence, really listening, and sharp symptom management, always checking for reversible causes before blaming the terminal illness.

And confidently managing pain, especially addressing those fears about opioids and addiction, which aren't the issue for dying patients.

Plus understanding A &H as a medical intervention that can be refused.

And differentiating euthanasia from legally assisted death, knowing the nurse's ethical boundaries there.

And finally, just understanding that grief is complex, with different types like PCBD and disenfranchised grief.

And knowing how crucial, supportive, non -cliche communication is.

Okay, one last thought to leave everyone with, kind of building on this.

Ira Bayak, another major figure in palliative care, suggests that dying isn't just about shutting down.

He talks about it as potentially a final stage of growth, with developmental tasks like finding meaning, reconciliation, letting go.

It's a powerful reminder, isn't it?

That even at the very end of life, there can still be profound human experience and development happening.

Our care needs to honor that possibility.

A really important perspective to hold onto.

Thank you for walking us through all of this.

And thank you, our listeners, for joining this deep dive.

We hope this discussion helps you in your practice and understanding.