Palliative care and medical interventions are not mutually exclusive

by Neha Jain, MD

Think back to your first memory of death.

Was it a loved one? A stranger? A pet? Were you sad, happy, or just curious?

My grandmother, Nani, died unexpectedly. During the wake, my cousins and I played together in the bedroom where we had been restricted. All through that memory, there’s a strange, dark, terrible sound.

It’s the sound of my mother, keening. I want to never hear that sound again.

Several years later, my grandfather died, surrounded by family and friends. One of his many granddaughters, a physician, pronounced him dead.

His death was a celebration. The clan gathered. There was a feast. A tent was erected for all the visitors who came to pay respects. Someone said, ‘Such luck. He will climb up to heaven on a silver ladder.’

Now lets think about your death.

How do you want to die? Slowly, so that you have time to say your goodbyes, or quickly, so that you never see it coming? In a hospital, at home, or wherever you happen to be at that moment? Do you want someone with you? Do you want to be alone? What are you afraid of?

More than half the people in this country die in a hospital.

The pager beeps at 1 am. I’m a spanking new psychiatry intern on night-float call for medicine.  ‘Could you please come and pronounce the patient?’

The nurse looks up from her desk and shakes her head at me as I walk into the room.  The patient is an old woman, small and gray. I put my stethoscope over her chest and wait for a full 90 seconds. I check the pupils, the corneal reflexes. Rub the chest. I write the time of death down on a piece of paper. There is no one else in the room. I say a quick prayer before leaving.

Five years later, I sit with a man who has cancer spreading through his bones. ‘I’m done. This is not the life I wanted.’

The family are aghast. They pull out pictures of grandchildren. ‘What do you MEAN palliative care? He could live for months!’

Yes. But he is going to die.

Palliative care does not condemn people to death. Life does.

Palliative care and medical interventions are not mutually exclusive.

What does palliative care do?

It tries to improve the dying person’s quality of life. It provides treatment for pain. It provides treatment for breathing difficulties, for physical discomfort. It does not exclude any treatment that would acutely help the patient, including antibiotics, medicines for appetite and anxiety, even chemotherapy.

It supports the person and the family through denial, anger, grief. It may continue to support them for up to a year after the patient has passed away. The goal of palliative care is to engage the person and the family in making the most of these last moments, days, weeks, months. Not to cure, but to restore.

Hospice is just one mode of palliative care. If a person wants to die at home, palliative care can provide hospice-at-home. Patients can qualify for hospice if their life expectancy is less than six months. They can qualify for palliative care, or be helped by a palliative team, much before that.

An NEJM study showed that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared, but they also lived nearly three months longer.

What can you do?

Talk about death and palliative care. Talk to your family and friends. Talk about their death and yours. (A death costume is not required, but use one if you must.) Make a plan.

Die as you would live, with choices.

Neha Jain is a geriatric psychiatry fellow who blogs at Sumpsimus.

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  • Diora

    I think one problem is that insurance wouldn’t cover hospice care when one is still receiving treatment. Many of the hospices wouldn’t even take a lung cancer patient who has pleurx catheter never mind that it actually allows to drain the fluid and improves the quality of life. Also, forget about clinical trials.

    My mom was in clinical trials for the targeted lung cancer drug that targeted a specific mutation that caused her cancer – EML-ALK fusion. This was an oral drug that had at least in her case had zero side effects. Yes, there are some side effects listed, but none that my mother noticed. In her case it was like eating candies. Unfortunately, by the time she got the drug, there were already some issues that hurt her quality of life specifically her previous attempt at pleurodesis left her with loculated pleural effusion that wouldn’t go away. But without the clinical study drug the cancer her symptoms would’ve gotten much worse, specifically she could’ve gotten pain from metastasis – she had bone metastasis but they were symptomless – or the cancer could’ve spread to her brain.

    Anyway, shortly before her death she got infection in her pleural fluid, and after they managed to drain it, the lung failed to expand. The cardiologist said no to surgery. She was on IV antibiotics, and the cancer center wanted to transfer her to a hospice for the duration of antibiotic therapy as medicare wouldn’t cover home IV drugs (talking about money waste…). But… most of the hospices wouldn’t take her because she had pleurx catheter, and none would take her while she gets clinical study pills. Again, it was OK for the insurance to pay more for her to stay in the cancer center, but not OK to get same thing at home, and in order to go to the hospice she’d have to give up the pills that kept cancer from spreading.

    But… While she clearly was terminal, and maybe would’ve benefited not just from temporary stay at a hospice but even palliative care at home, stopping the clinical study drug meant more than just shortening the life – it meant that the cancer that was stable would spread, that she might get more pain, more difficulty breathing, or the cancer would spread to brain. Whereas staying in the trial meant that maybe she could be as comfortable as she could be.

    She died a couple of weeks after getting out from the hospital. I don’t know what happened, She was doing OK for the first few days, we even had hopes that she’d regain some of her strength. When she got breathing problems, I didn’t have time to take her to the cancer center as it was 1-3 hour drive without traffic. The local doctors thought it was pneumonia and that it was hopeless, and my mother said she wants to die and doesn’t want any more treatment, and I followed her wishes – she has been very vocal about letting people die throughout her life, and actually expressed the wishes herself in the ER as she was completely in control, she even told the doctor she wants to die as soon as possible. I confirmed that it wasn’t new, that she had been telling it before which was true. The doctor said that even if she gets better, she’ll just get sick in a week again. But then, the oncologist from the cancer center who called me a few days after I buried my mom told me she thought it was a blood clot. This was a shock, and for some time after that I was blaming myself thinking that if it indeed was a blood clot, that if only I had driven my mother to the cancer center, and did it a few days earlier, she’d still be with me, and did she really want to die or was it only because of this last crisis, but eventually I figured it’s pointless.

    Regardless, it’s a little off topic, but the point is – why should patients have to give up the treatment that can not only prolong life but has potential to improve quality of life or even keep the quality of life from deteriorating in order to get palliative care? Cancer spread is usually accompanied by worsening of symptoms, so if a treatment keeps it stable and doesn’t have any side effects, why should one give it up? In the case of clinical trials, one even does something good and provides information that can help others.

    • Neha

      You have a valid point, Diora. Most of the time, a hospice will not accept patients who are utilizing life prolonging measures; however, measures that simply improve quality of life can/are often included. There is often an overlap between the two- goal of such interventions needs to be clearly defined.

      Participation in clinical trials is considered inconsistent with a ‘terminal’ diagnosis, which may not always be accurate as demonstrated by your mother’s treatment. I hope that this will change in the future.

      Losing a parent is one of the most difficult things anyone can go through-the ‘ifs and buts’ are especially hard. I hope you have found some peace in the thought that you did everything you knew to do at that time to keep your mother comfortable.

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